Stage Fright (and other updates)

Things have been busy (in a mostly good way) over the past few weeks.  Been up since 4am thanks to steroids and a hungry baby so I've been feverishly tyyyyyping away.  Happy reading! 

Sweet Potato Update:

Ben had his 2-month check-up last week and is doing really well!   He now weighs in at 10lb. 4oz so he’s gaining steadily and the pediatrician is pleased.  He also had his first round of vaccines and handled them like the superhero baby he is.  

Getting some advice from Spiderman before his shots

I’d like to get on a soapbox for a minute and stress the importance of vaccinating children.  As a behavior analyst, I've worked for many years with people with autism and other developmental disabilities.  There are a lot of theories out there about what causes autism, but I can tell you that it’s been proven time and again that vaccines do NOT cause autism.  This myth has been perpetuated since 1998 when a British researcher published a study that has since been retracted because his “results” were essentially fabricated.  Once this was discovered, his medical license was revoked and the so-called study was removed from publication.  But of course, this false information continues to make its way around the internet and elsewhere, giving parents something to stress about unnecessarily while putting the rest of the general public at risk if an outbreak occurs.  While we’re at it, I suggest that you pretty much ignore anything Jenny McCarthy has to say about autism.  She has a few screws loose.  Oh and also Dr. Oz (ahem....mom....)

Ben’s current sleeping record is 6+ hours (yay)!  Most nights he sleeps in 3-5 hour stretches.  Progress.   He was born with a freakishly strong neck and has been able to lift his head up almost from the start.  But now he’s starting to do it more steadily and for longer periods of time.  At exactly 8 weeks old, he rolled over for the first time!  Of course, I was the only one who witnessed it.  He did it again for me the next day, and finally did it in front of Jeremy on the 3^rd day.  Pretty exciting!  And hasn’t done it again since  :)

Ben is becoming more alert by the minute and it’s so fun to see what catches his attention.  His current BFF is our ceiling fan (AKA “Fan Man”) who he greets every morning with a smile before intently staring in awe for a good 5 minutes.  He also likes looking at the pictures on our walls or staring at you with one eye slightly open while pretending to sleep.  He doesn't miss a trick.  If you stick your tongue out at him, he’ll imitate you every once in a while.  He’s starting to coo and smile and pay more attention to us and some of his toys.  He slept through his first restaurant outing when my aunt and uncle came for a visit (we miss you already, xo), and also had his first trip to Target.  His car seat took up most of the shopping cart, so my question is, where am I supposed to put all my Target impulse buys?

Follow-up with Surgical Oncologist:

I had a 3-month follow up with my surgical oncologist (Dr. A.) last week.  I brought Ben along because I figured that she might like to meet him as living proof that he came out ok :)  We discussed her role in my treatment from here on out.  Basically, she’d like me to have an MRI and mammogram this summer, when I’ve completed all of my chemo and radiation.  I’ll continue to rotate having an MRI or mammo every 6 months, for the next couple years.  This is her method of monitoring for any recurrence.  She also explained that a recurrence can still happen on the side where I had my surgery, despite the fact that, you know, it’s FLAT AS A PANCAKE!   But a recurrence on that side might feel like a BB pellet, or could even appear as a visible sore or ulcer that doesn’t heal.  And recurrences are more likely to happen within the first few years after initial diagnosis.  Good to know. 

She feels pretty strongly that my cancer likely developed as a result of some kind of genetic mutation, even though the genetic testing came back “negative”.  Cancer research is evolving every day, so she feels it's feasible that I have a mutation that the current testing just isn’t capable of detecting yet.  The simple fact that I'm so young, and that my sister was also diagnosed, along with the size of my tumor and extensive lymph-node involvement puts me in the high-risk category of recurrence. 

Here’s a refresher of my info:

Diagnosis:  Stage 3C Invasive Ductal Carcinoma Breast Cancer, diagnosed 7/14/14 

Hormone Receptor Status:  ER/PR + (32% ER, 96% PR),  HER2 -

Tumor:  Grade 3, 11 cm (removed with clear margins)

Lymph Nodes:  43 lymph nodes removed, 21 of those tested positive for cancer cells

Diagnostic Testing:  Chest x-ray and liver ultrasound in July ’14 showed no signs of metastasis.  No MRI or other more extensive testing due to pregnancy.

Treatment:  Full right mastectomy in July ’14.  Recovered for about a month, then completed 4 rounds of AC chemo (every 3 weeks) during the pregnancy.  At 2-weeks post-partum, began 12 weekly rounds of Taxol.  Radiation will begin in March 2015 and long-term hormone therapy will follow.

Prognosis:  This is tricky.  I’ve never been given any type of “prognosis” by any of my doctors.  They haven’t really gone there yet, as the focus has been on the here and now.  So much of this is a guessing game anyway, as I was never able to have more thorough diagnostic testing due to being pregnant.  Survival rates for stage 0-2 breast cancer is FANTASTIC:  93-100%.  Not gonna lie, I really envy those statistics!  The 5-year survival rate for Stage 3 breast cancer is about 72% (source: www.cancer.org).  But I believe that my specific circumstances puts my 5-year prognosis closer to 50%.  I’m riding on the edge of Stage 4 which is incredibly scary, since at that point the 5-year survival drops to about 22%.  I’m hoping to get a better handle on this once treatment is done and I (finally) have a PET scan.

We also talked about starting radiation.  Once chemo is completed at the end of February, I will then be referred to a radiation oncologist.  They typically start with a CT scan to pinpoint exactly where to aim the radiation.  Radiation is conducted 5 days per week, for about 6 consecutive weeks (I’ll get more info about my specific treatment plan once I meet the new doctor).  The actual procedure should take only 10-15 minutes, but add in travel time, checking in, waiting time, etc.  and I anticipate that it'll take a few hours every day.  As I can already anticipate the scheduling headache that this will cause with trying to work and find someone to watch Ben at varying times each day, I’m hoping there’s a treatment center a little closer to home, rather than at the hospital where I’ve been getting chemo.  But, I’ll go wherever my doctors think is best.

After radiation, the next step is hormone therapy.  My cancer is hormone-receptor positive, which means its growth is fueled by the estrogen and progesterone naturally present in the body.  This is good and bad.  The bad news is that this is probably what “fed” the cancer and made it grow so ridiculously fast.  The good news is that there are medications that can effectively suppress those hormones, which will essentially “starve” the cancer and reduce the risk of recurrence.  Hormone therapy is long-term, meaning I’ll be taking daily medication for at least the next 5 (but probably 10) years.  Recent research has shown that taking it for 10 years has been more effective than the old standard of 5 years.  You cannot get pregnant while on hormone therapy because it causes birth defects.  So, while having other children might not be in the cards, I can be totally fine with that as long as I’m here to watch Ben grow up.  That's all I want.

Chemo Update:

I’ve now completed 8/12 Taxol treatments.   The nurses had some trouble accessing my port the last few weeks, so they asked me to do a series of movements to help get it going (raising my arm above my head, taking deep breaths, turning my head to the side, reclining my seat).  None of this worked (despite my offer to stand on my head and do jumping jacks), so they had to do something called a cath flush.  This is basically a liquid solution inserted into the port to help loosen any clots.  It only added about 30 minutes to the treatment, so it’s not too much of a setback.   They just can’t figure out why it keeps happening as it’s usually not an issue for patients whose ports are used on a frequent basis. Once chemo is done, the port will be surgically removed via a quick outpatient sedation procedure.

Taxol side effects have been (mostly) tolerable but interesting to say the least.  Since the effects are cumulative, I kind of compare it to shock therapy where each week they turn up the voltage a little bit and see how much you can take.  The current lineup includes: bloody noses, water having a weird slimy aftertaste (not sure how else to describe it), muscle aches, fatigue, slight hair loss, upset stomach, numbness and tingling in fingers (haven’t noticed it much yet in my toes), sore nailbeds, weird sense of smell (I swear my skin smells faintly of syrup, or maybe I just want pancakes), trouble remembering names of things, and general absentmindedness.  At the pet store the other day I bought cat treats for Charley.  He didn’t seem to care though.

After chemo on Tuesdays, I'm usually flying high until about Thursday afternoon (thanks steroids!).  Once they start to wear off, the muscle aches set in and by Friday afternoon I crash and burn.  I tried taking OTC Claritin to help with this, because other people have sworn that it helps, but I didn’t notice much relief (I had asked my oncologist his thoughts on this and he was skeptical that it would help but said I could feel free to try it).  Needless to say, the weekends have been pretty lazy!

Tummy time for all

Miscellaneous Updates

Thank you to all who continue to check in on us.  Once all the fanfare after my initial diagnosis died down, it's nice to have people continuing to cheer me on 5, 6, 7 months into treatment.  I’m no marathon runner, but that’s kind of how I describe this process.  I’m getting tired and keep focusing on the next milestone…1 more chemo, 1 more appointment…etc. etc.  Jeremy is a huge help, but he gets tired too.  He’s had a cold that I’m pretty sure is actually bronchitis ever since he went back to work the first week of January (thanks a lot, kids!).  The hacking cough won't quit.  After working all day, he comes home to watch the baby so I can go to work.  But he also has to complete assignments for his graduate course (and don't get me started on the various inefficiencies of how his courses are conducted).  We don’t see each other much during the week, except to eat a late dinner and get ready for bed.  Plus, me and Ben have to try and keep our distance from him which is so hard, but ain’t nobody got time to catch bronchitis!

My sister has started radiation and so far, so good.  She earned herself a cruise to the Bahamas to recharge her batteries before her weekly treatments started :)

Finally, if you could, please send some prayers and support to my mother-in-law, who is continuing to go through more than her fair share of health issues and never-ending bad luck.  Come ooooon 2015, time to throw us a bone!