Goodbye Chemo, Hello Radiation

I'm happy to report that I successfully completed my last chemo treatment on 3/3/15!  It was delayed for 1-week due to being sick, but after a round of antibiotics, a LOT of rest, and calling in the grandmas for reinforcement because I had to stay away from the baby, I was up and running again and able get my 12th and final Taxol.  This is a big milestone and I'm excited to finish up because it has NOT been easy!  Here's a glimpse of what February was like:

Chemo every Tuesday.  My port mostly cooperated and my labs were stable each week.  The side effects definitely worsened with each treatment.  People always ask how I'm doing and since I don't want to subject them to a laundry list of ailments, I usually just respond with "I'm feeling great!" because it's just easier that way.  But for those of you who are curious, here are the things I've typically been whining about to my husband (someone please give him a medal and/or a beer)...

-back/neck/shoulder/everywhere aches:  Like whoa.  I'm talking about a kind of deep, throbbing ache that makes it hard to concentrate on anything else because the discomfort is so annoying.  At times I feel it from my teeth to my toes. It settles in for most of the week (except wonderful, glorious, Wednesdays, when the steroids are in my system and provide some temporary relief.  Thank you Lord for steroids!)

-hot flashes: thanks a lot, steroids.  

-Everything I eat or drink has a weird slimy aftertaste.  And in general, stuff just tastes a little off.

-stomach/digestive issues that like to happen suddenly and urgently.  This is extra super exciting when you aren't home.

-headaches

-fatigue...by the end of the day, all I want is to lay down with a heating pad (best $30 I ever spent since this whole mess began). This is heavenly, but then a hot flash occurs and I become a raging biatch.

-bloody noses (something to do with the Taxol drying out your sinuses)

-half of my toenails are black and blue, which I didn't notice until I took the nail polish off :)

-neuropathy:  I've been dropping things a lot because I've lost some feeling in my hands, mostly my right hand.  Sometimes it feels like little electric shocks or pinpricks.

-beginning symptoms of lymphedema:  I had a lot of lymph nodes (43 to be exact) removed during surgery, and because of this, my right arm is at risk of developing lymphedema (painful swelling). Over the past several weeks, I've noticed some symptoms starting to occur.  There's no "cure" for it, but it's a lot easier to manage if caught early, so I was referred for physical therapy.  I put therapy on the back-burner last year when I found out it's a $300 co-pay for each visit (and they want you to go a few times per week).  But, it needs to be done.  I'm looking into a possible grant that might help cover the cost.  

-"chemo brain":  At times I feel like I can't put a sentence together, and have trouble finishing my thoughts.  That's why this blog is helpful to me because I can type a little bit at a time and organize my thoughts :)

I think it's difficult for people to fully understand what this is like unless they've been through it.  I have a whole new level of respect for anyone who's had chemo.  It makes you an official bad ass, in my opinion.  Bonus bad-ass points if you did it while pregnant (and I've learned that there are a lot of amazing women out there who have!)  Now that I'm done with this phase of treatment, I'm anxious to start feeling more like myself again.  I'm also hopeful that the side effects will start tapering off because the muscle aches and hot flashes have overstayed their welcome.

This is kind of a scary "in-between" time because chemo's been my security blanket...it's made me feel like I'm actively doing something to kill the cancer cells.  I'll also miss the nurses who took such good care of me for the past six months.  

Two days after my final chemo, I met my radiation oncologist.  She'll be taking the lead on the next phase of treatment, so we had an initial consultation in which she reviewed the details of my case and discussed her plan of attack.  She recently met my medical oncologist when he presented my case at a monthly "tumor board" meeting held at the local hospital.  So, she already had a full page of notes about me before we even met, and went over her notes to make sure she had everything correct. I was a little nervous about switching to a doctor in a completely different "network" (because this facility is closer to home), but it was clear that she did her homework and so far I'm feeling confident about my decision.

She explained that I'll have a total of 30 treatments, which equates to 5 days per week for 6 consecutive weeks.  The radiation will target the entire chest wall on the right side, as well as areas above the collarbone,  below the armpit, and across my entire mastectomy scar.  The last five treatments will focus solely on the scar, because that's the area where recurrence is most likely.  

Side effects include skin changes that will basically feel and look like a sunburn (on top of a sunburn, on top of a sunburn) and fatigue.  Sometimes, radiation can graze the esophagus and cause trouble swallowing, or affect the lungs and cause shortness of breath. In rare cases, it can cause rib fractures, but my doctor's never seen it (though she knocked on wood to be safe).  

A week later I returned to have what's called a "simulation".  This involved a whole mess of stickers, paint, Sharpie markers, and even permanent tattoos (small dots) all over my chest.  I was instructed to lay in a certain position and then had a CT scan.  This will help ensure that the radiation is aimed in the correct areas.  For each treatment, I'll lay in the same position, and the tattoos, stickers and paint will help the technicians line everything up correctly.  The right side of my chest looks similar to this:

It'll take them a few days to finalize the treatment plan, and they'll call when they're ready to begin. So, right now I'm on "break" (but I use that term loosely...)

During the week when I was super sick, our sweet dog Charley started losing the ability to use his hind legs.  This led to a 3-hour visit with the vet, who then referred us to another 3-hour visit with a veterinary neurologist. The neurologist performed a lackluster exam and then presented us with a $5,000 estimate if we wanted to find out what was wrong (and about $3,000 more to possibly fix it).  Kthanksbyeeeeee.......

Now, I love my dog more than I love most people, but we're not exactly rolling in cash at the moment.  We ultimately decided to try an approach recommended by our vet, which involves a lot of medication and about 6 weeks of strict movement restriction.  We sectioned off a corner of our living room for Charley to stay in, and he was perfectly content...until we told him "goodnight" and headed upstairs for bed without him.  This led to whining, howling, barking, and eventually plotting an escape from his area.  So, Jeremy slept on the couch next to Charley for a week until we could figure something else out.  We ended up getting a travel crate so Charley could safely be carried up/down the stairs and Jeremy could sleep in an actual bed.  We've been doing this for the past week and so far it's working out nicely.  But, he can't be left home alone so it's been a little tricky to always ensure that someone can be with him.  

Now for some baby talk :)

Ben has been doing GREAT!  He's approaching 4 months old now, and weighs over 12 lbs.  He recently started sleeping through the night (we're talkin' anywhere from 8-12 hours...yay!) and when he wakes up he is SO HAPPY.  When you walk into the room, he breaks into a big grin and can't contain himself.  It's pretty much the best thing ever.  He's been babbling a lot (still practicing his "I love you's") and is on the verge of having his first real laugh.  He loves getting a bath, chewing on his hands, and laying on his changing table.  He's not a huge fan of tummy time but we're working on it.  Here are some pictures from the past month:

Love this smiley guy!!

Lounging on his playmat

Turtle Power!

Snoozing with his aunt

Going for a walk with Nana

"Say ma, does these suspenders make me look smart?"

Visiting Daddy's school for a "meet the baby" shower :)

Shower treats

Jerm's hair is longer than mine :/

Shout Outs

1.  Hope for Two An excellent resource for women facing a cancer diagnosis during pregnancy. 

2.  Lisa's Army  A great group of volunteers who deliver care packages for people going through cancer treatments.  My sister and I both received care packages from Lisa's Army and continue to receive ongoing encouragement from them :)

3.  Fundraiser for Debbie Elsasser  This is a fundraiser I recently started for my mother-in-law who is going through a difficult time.  In the spirit of paying it forward, please take a look and help if you are able.

Hold the Confetti

My last chemo was supposed to happen yesterday, but turns out it wasn't in the cards quite yet.  I rolled into the hospital with a fever teetering on 104 degrees and just feeling generally crappy and cold.  So cold.  They sent me for a chest x-ray (to rule out pneumonia), took some blood cultures, and gave me fluids for a few hours.  My official diagnosis is "the bug that's been going around."  Then they sent me home with a fever holding steady at 103.9 and a script for a z-pack.  You'd think they would have popped me a Tylenol or two! 

I've pretty much been in bed ever since, trying to get the fever to go down (and stay down).  Haven't been able to get it under 100 yet but I'm working on it.  And I'm super disappointed that my chemo has been delayed.  So in the meantime, here are some cute pictures and a video clip of Ben that I enjoy looking at while I'm currently in quarantine and not allowed to hold him!

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!

Back to the Daily Grind

Now that the holidays are over, it’s time for us to get back into somewhat of a regular routine.  Jeremy went back to work on Monday and hit the ground running at 5am.  No teacher planning day for him, as students came back on the first day as well.  After being out on leave since mid-November and also learning that he now has a new student in his class, he dove right in and is preparing for his district evaluation sometime in the next week or two.  Not to mention that he’s also getting started on his next graduate course.  No rest for the weary!  My plan is to ease back into work starting this afternoon, seeing 1 or 2 clients per day once I make arrangements to have someone watch Ben, otherwise I have to wait until Jeremy gets home around 4pm and schedule appointments after that. Because apparently, Ben's not yet old enough to watch himself?!  I kid, I kid.  I gotta say I'm pretty proud of him at the moment because he slept for 5 hour stretches for the past two nights. That's his current record and it was heavenly and it was glorious and I hope we continue on the path to 6...7...8...9 (is this even possible???) hours.

Passed out in his typical sleep position.

On Monday, I had my first taste of a full day home alone with an almost 7-week-old.  Things went pretty smoothly, though I didn’t manage to make it out of my pajamas and spent the better part of the morning on the phone with my insurance company, being shuffled around to five different customer service agents who it seems aren’t trained to do much more but repeatedly verify my date of birth and address and then transfer me to another department (translation: put me on hold for another 20 minutes).  After an hour of this nonsense, the call got dropped (%!*#) so I gave up and tried again in the afternoon. 

I received a notice back in November that my health plan was still being offered as of January 1st, with a rate increase of $60 more per month.  Ok, I can deal with that.  But then I learned that adding a dependent child to the plan would be an additional $250.  So, we’ll immediately need to start budgeting an extra $310 per month…yikers!  Unfortunately, despite the significant amount of work I've missed over the past 6 months, we still make jusssst enough money to not qualify for any subsidies through the Affordable Care Act, so we pay everything full price out of pocket.  I have to admit that my fancy "platinum plan" with all the bells and whistles has been excellent though, considering how much I’ve needed it lately.  And the last thing I need is to change plans only to discover that all of my doctors are out-of-network, etc. So I’m sticking with it for another year and am confident that things will work out.

Weekly chemo continues every Tuesday. I've now completed 5/12 treatments, so almost halfway finished.  This week my dad came along with me, so my mom could stay home with the baby (thank you Nana & Grampy!).  My two favorite nurses were working today and I had no issues with my port and got just the right amount of Benadryl.  It was a quieter day at the hospital, and we both passed the time napping and surfing the internet.  

My main side effect continues to be muscle/bone pain primarily in my back, neck, and shoulders.  I'm starting to notice that it hits a little harder as each treatment goes on, usually beginning on Thursday/Friday and lasting through the weekend.  I haven’t taken anything for it yet (I’d rather just be stubborn and complain about it to you people), but plan to talk to the oncologist about it at my appointment next week.  One of the chemo nurses mentioned that a lot of people with similar side effects were told to take OTC Claritin, which sounds really strange but for some reason it helps them tremendously.  I’ve considered getting a massage, but the last time I had one a few years ago, I developed something called frozen shoulder a few days later.  I’m not completely sure whether or not the massage “caused” it, but all I can say is that frozen shoulder is the absolute WORST pain I’ve ever, ever experienced and now I’m terrified to get another massage.  In the meantime, my trusty heating pad and getting as much rest as possible help take the edge off. 

In other news, I’m almost certain our household appliances, which are all pushing 13 years old, are staging a mutiny.  The ringleaders are the washer and dryer, a stackable unit that have banded together to cause chaos in our kitchen (which is a really stupid place to install a washer/dryer unit in a two-story house but that's neither here nor there).  They are SO. LOUD.  One of these days I think they're going to violently rattle themselves right out the back door.  I’ve resorted to doing laundry during Ben’s nighttime feedings so we don’t have to run the machines during the day.  You seriously can’t hear yourself think when they’re running, let alone have a conversation or listen to the TV.   I’m not one to throw away or replace anything until it’s absolutely necessary.  But I might have to eventually cave on this one because I’m slowly losing my mind.   Sometimes being a homeowner is the worst!

I’ve just realized that this post has been a little heavy on the whining, so I’ll end with a few positive things:

1.  My sister starts radiation soon, going 5 days per week for 6 weeks.  She recently had a CT scan, which will help pinpoint exactly where the radiation needs to be aimed.  She’s doing great and chugging along one day at a time.  Love you!

2.  Our whole family is excited for an upcoming visit from a verrrry special Aunt & Uncle.  AL & US, can’t wait for you both to meet Ben and enjoy January in Florida!! XO

3.  It seems that lately, everyone I know has either just had a baby or is getting ready to have one soon.  And I just want to say congrats to each and every one of you.  Yay for babies!  Babies are great!  Except for when they don’t poop for days.  But don’t worry, it’s totally and completely worth it :)

Fist bump for babies!

4.  I want to take a minute and direct your attention (and prayers) to an amazing person named Mollie.  Though I’ve never had the pleasure of meeting her in person, she’s a fellow behavior analyst from the same FSU graduate program I attended.  Mollie is currently battling a very rare form of cancer called Enteropathy-Associated T-cell Lymphoma (rare as in 1 in 2 million rare).  Like myself, she was diagnosed last summer and was immediately sucked into the world of cancer.  She’s been through pretty much every hurdle that you could imagine.  And did I mention that she’s the mother to two adorable young boys who both have special needs?  She does it all with a strength and sense of humor that will blow you away.  And next up on her agenda is a stem cell transplant.  If you're on Facebook, you can follow her story by searching for #TeamMollie  (it’s a public group).  You can also check out Mollie's GoFundMe page if you'd like to read more about her and possibly make a donation.  Every little bit truly helps, so pay it forward if you can!  

I hope everyone’s 2015 is off to a happy and healthy start.  Thank you as always for reading.

-Dee

Bring on 2015!

I have mixed feelings about 2014.  It somehow managed to be my best and worst year all at once.  I'd pretty much like to take the little bundle of awesomeness that came out of it and run with him straight into the new year, leaving all of the other garbage behind!  Seriously, it was just NOT a good year, not only for myself, but pretty much everyone in the family, including our sweet puppy Charley!  Ok, he's pushing 10-years-old and has to eat the special "senior" dog food, but I will always, ALWAYS refer to him as a puppy.  Two sisters going through cancer treatment simultaneously, a brother-in-law enduring major heart surgery, and a mother-in-law who's had a dark cloud situated right above her head that she can't seem to shake.  It's not my story to tell, but please keep her in your prayers that she can finally have some good luck and good health come her way, as she could desperately use both.  We as a family have witnessed the amazing kindness of others (such as so many of you who are reading this!), but unfortunately we've dealt with a few grinches as well.  I guess that's just life.

I've completed 4 out of 12 Taxol treatments now, and it's continuing to go very well.  My labwork is usually great, just slightly anemic at times.  On the day of treatment, they give me Benadryl, which immediately knocks me out for a good hour at the hospital.  A few times, the drowsiness continued for the rest of the afternoon, and we realized that on those days I was given a double dose.  Turns out there was some confusion about how much the doctor prescribed, but they finally settled on the smallest dose since I seem to do okay on it.  The day after treatment, I usually feel wired as a side effect from steroids.  For example, today I woke up at 4am to feed Ben and have been up ever since, cleaning the house, writing monthly reports for work, running errands, writing this post, and just being super productive.  I'll probably crash before midnight and completely miss the NYE countdown.  Although, now that there's a baby in the house who demands to eat every 3 hours OR ELSE, there's a good chance I'll be awake whether I want to or not :)

Other Taxol side effects so far are mainly muscle/joint aches and pains that settle in 2-3 days after each treatment.  It almost feels like bruising in my neck, back, and shoulders, so a heating pad works wonders when I crawl into bed at night.  This will last for a couple days and then taper off, just in time for the next treatment.  I've felt slight tingling in my feet and hands, but that comes and goes.  Throw in some fatigue, some headaches, but nothing has been "unbearable".  A few times, I've lost my balance and fallen over while sitting or bending down on the floor, but that might just be straight up clumsiness :)

Ben had his 1-month checkup and did great!  He weighed in at 8lbs 4oz. which means he gained just over 2 pounds since birth.  He's currently in the 10-15th percentile for weight, but he started out in the 3rd percentile, so the doctor was happy to see that he's gradually climbing the chart.  We mentioned that Ben had been having some constipation issues, one time going about 53 hours without a bowel movement.  The doctor suggested giving him 1 ounce of water twice a day but didn't seem overly concerned about it.  I guess it becomes a bigger issue if it gets to the 72-hour mark.  He also said that if the water doesn't work, you can try mixing 1 ounce of water with 1 ounce of juice (apple, pear, or white grape). We started with just water and this seemed to do the trick over the course of the next few days.

After completing my 3rd Taxol treatment on 12/23, Jeremy and I made a last-minute decision to head to the Panhandle on Christmas Eve to visit his family.  Ben and I got the okay from our doctors, and were just told to steer clear of any snot-nosed kids or sick people who might spread germs, since both of our immune systems are puny.  Ben did great on the 6 hour drive and it was "super fun" to execute a diaper change in the back seat of the SUV in a McDonald's parking lot.  We gave the drive-thru customers quite a show.

Ready for a road trip!

Ba Da Bop Ba Ba, he's lovin' it.

Ben got his first taste of a "Southern" Christmas, as Jeremy's dad lives in a tiny little town in the middle of nowhere where everyone says "bless yer heart" and all of the other Southern cliches.  The nearest grocery store is almost 30 minutes away, there's no cell phone service, and each morning we wake to the sounds of roosters and distant gunshots from deer and duck hunters.  Their idea of "traffic" is if they see more than 2 cars on the two-lane stretch of road to and from "town" which is basically one traffic light and a Piggly Wiggly store.  But boy, his family knows how to cook some crazy delicious food!  All we do when we visit there is eat and then go into food comas.  It's so relaxing and I love every minute of it. 

Merry Christmas 2014!

Alarm cocks

Backyard view

Christmas morning nap

My two loves <3

Additional naps by the fire :)

Fishing Themed Christmas Tree in Appalachicola, FL

But of course, this visit was a little different because this time we brought Sweet Potato along to meet the rest of his extended family.  Unfortunately, Jeremy's grandfather has had failing health over the past year and recently moved into a nursing home.  He was just getting over a cold, so the decision was made that Ben and I shouldn't visit him, which was unfortunate because this was one of the main reasons we wanted to take the trip, so Ben could meet his great-grandfather (who also suffers from dementia). Jeremy ended up going to the nursing home and took along some pictures of Ben. We also brought a recordable story book, so all of the grandparents could record themselves reading a story to Ben.  I think this will be really special to have as Ben gets older.  I'm just bummed we couldn't get any pictures of the four generations together, as we don't get to visit there often and his grandparents don't travel.

Ben had some digestive troubles during the trip, which made things a bit stressful.  He hadn't had a bowel movement in over 48 hours, and the water alone didn't seem to be working.  At night, he seemed very uncomfortable and fussy, and the three of us were stuck in a tiny guest room trying to deal with it, which meant nobody slept much!  We wanted to try mixing the water with apple juice, but we didn't have any juice on hand and of course all stores were closed for Christmas.  So, we'd have to wait until the next day (not to mention drive almost an hour round-trip just to get to the store).  We contemplated driving home a day sooner than planned, but decided to wait it out.  We finally got our hands on some juice and crossed our fingers that it would work soon.  The next morning, about 45 minutes before we headed home...success.  Phew :)

Time to get ready for a NYE dinner date.  No need to do my hair though, so this shouldn't take long!  Happy New Year to everyone.  My only resolution for 2015 is to complete my mission of kicking cancer's ASS.  And then, I'd like to take a vacation to New Orleans because that's my happy place and we didn't get to go this year. Everyone's invited so start saving now :)

Baby's First Month (and Inductions are Dumb)

Here's a recap of Ben's birth story, for those interested.  I include a lot of details because perhaps there's someone reading this who's going through a similar situation and might want to know what the process is like.  However, I also realize that other readers (such as a random person from middle school who I haven't talked to in 15 years) might not be as interested in the details, so consider this my disclaimer and read at your own risk!  

I was scheduled for an induction on November 20th, exactly 1 month before my actual due date.  This date was selected by my treatment team as the optimal time where the baby would be developed enough to be delivered with minimal risks of complications, while also allowing me a brief recovery period so that I could get back on track with the next phase of chemo.  It had already been 3 weeks since my last chemo treatment, and my oncologist wanted me to start the next phase as soon as safely possible.  If I were to carry the baby full-term, too much time would elapse between chemo.  So, the induction date was set at about 35 weeks gestation.  We were told that it was a possibility, however, that Sweet Potato would have to go to the NICU for monitoring should any complications arise. 

A lot of people assume that a cancer diagnosis during pregnancy automatically means that you'll have to have a C-section.  However, this was not the case.  A C-section is considered major abdominal surgery, with various risks and a longer recovery time.  The biggest risk for me was infection, which would potentially delay the start of chemo.  If I were to have a natural delivery, I could start chemo within 1 week; for a C-section, I'd have to wait a minimum of 2 weeks, and possibly longer if there were any issues with the wound not healing properly.  Timing is everything.  My only fear was that I'd go through a long and drawn out induction, only to end up having a C-section...

So, on November 20th, Jeremy and I checked into the hospital at 5pm to start the induction process.  The plan was to begin with Cervadil, a medication intended to soften the cervix.  Before this could begin, however, I was hooked up to fetal heart-rate monitors to make sure Ben was cooperating.  Of course, he wasn't engaging in enough acrobatics to please my OB, so we were sent for yet another bio-physical profile (ultrasound).  And once again, he only passed 3 of the 4 criteria so the doctor switched to plan B.  Instead of starting with Cervadil, I began a low dose of Pitocin, an IV medication intended to jumpstart labor.  This was given to me overnight and I was encouraged to get some sleep (ha!)

The next morning, another bio-physical profile was conducted.  Jeremy and I are fairly certain that we could now qualify to work as ultrasound techs.  Beforehand, I was encouraged by the nurses to order the most sugary breakfast the hospital could provide, to ensure that Ben would wake the eff up for the test.  Toast+butter+jelly+yogurt+juice= success!  So, the nurses began increasing the Pitocin every 30 minutes or so.  Things were starting to get exciting and I finally began to feel some contractions!  My sister headed to the hospital to be my honorary photographer/labor encourager.  I told the rest of my family to sit tight, as I didn't want them all to make the trek to the hospital just to sit around and watch the clock. 

But alas, the Pitocin increases began to fizzle out, as they'll only continue increasing the dose based on how the contractions are progressing.  I forget exactly how they determine this, but for whatever reason, things were put on pause for a while and then completely turned off.  This was a weird feeling because as soon as they shut off the Pitocin, the contractions stopped.

Later that evening (about 24 hours into the induction), the doctor decided to revert back to the original plan and start the Cervadil.  This medication is inserted vaginally, which was not the most comfortable process as it took two nurses three attempts to get it right because apparently my cervix was hiding somewhere up near my intestines.  Hey, you were warned to read at your own risk but I assume we're all friends now.  Anyway, this med takes about 12 hours to take effect, so I was told once again to "get some sleep" and we'd check my progress in the morning.  I was then offered an Ambien, which I gladly accepted and finally got a decent night's rest.

The next morning, the nurse checked my progress and I was dilated (finally!) to about 1.5cm.  Not much, but the nurse seemed pleased and left the room to update my OB.  After a few minutes, however, she came back and said that the OB was hoping that I would've dilated more, and felt that it was time to move forward with a C-section.  She'd be on her way to the hospital in a few hours. 

Well, this was pretty much the one scenario that I was hoping to avoid: 40+ hours of being induced only to end up having surgery.  Every day counts, and I knew this would affect my chemo schedule.  But this baby's gotta get himself born somehow!

Phone calls were made to the family to head to the hospital and we visited for an hour or so before it was time to head to the OR.  Both of my OB's came in to talk briefly and I was relieved that they'd be working together.  If you recall, about halfway through my pregnancy and right when I got the cancer diagnosis, a new OB joined the practice and I was bummed that I basically got handed over to her, instead of the original OB whom I really like.  Jeremy was instructed to don a full-on spacesuit and mask and we walked together down the hall.  He was then told to wait outside with one of the nurses while I headed in to get prepped.  What a weird feeling to walk yourself into an operating room!  The room was freezing cold and 80's music was playing which was oddly comforting.  I immediately began shaking uncontrollably, mostly due to nerves and the start of apparent hypothermia (I never get cold!).  I was told that the spinal epidural will also cause the shakes, so my arms and teeth continued to chatter nonstop throughout the entire procedure.

The anesthesiologist sat directly to my right and talked me through each step of what was happening.  Once I got settled into place, a giant curtain was placed in front of me to block the action, and Jeremy was seated to my left.  Then both of my OB's came in and got right to work.  It was very much an out-of-body experience as I could hear them casually talking about Black Friday shopping while they cut me open.  Though I didn't feel any pain, there was slight pressure when they actually took the baby out.  They held him up so we could see him briefly and he let out some very healthy cries!   Music to our ears :)

The nurse called Jeremy over while Ben got inspected and I craned my neck to watch.  The nurse said that Jeremy could touch him, and I watched from afar as he gingerly held out his finger and Ben grabbed it right away.   I know, I know, it's a basic grasp reflex, but...swoon!   Jeremy cut the cord (which he hadn't planned on doing, so props to him for making a game time decision!) and before we knew it, I was stitched up and ready to be wheeled out. They placed Ben in my arms and off we went to the postpartum room.  No need for the NICU!

The next few days were a whirlwind of visitors and various nurses and staff coming in and out of the room at all hours.  All. Hours.  The pediatrician on call (who works in the same practice where we'll be taking Ben) checked on us every day, and was extremely caring.  He even put me in touch with a local mother who was also diagnosed with breast cancer during her pregnancy and now has a healthy 1-year-old.   She actually called me while I was still in the hospital, so we chatted for a bit and exchanged contact information.  Our situation was a bit unusual for a lot of the nursing staff, and at times nurses stopped in just to say hello who didn't even work with us directly.  Some nurses from the L&D unit came over when their shifts ended to check on us.  I can't say enough about how awesome all of the nurses and techs were.  

Recovery from a c-section is no joke.  I felt fine at first, but once the meds began to wear off, I learned that it's really hard to try getting in and out of bed without using any abdominal muscles!  I was stubborn about taking additional pain meds, but the nurses eventually sold me on the wonders of Percocet and I'm glad I finally listened to them.  

Ben was born on a Thursday, and by Friday evening my OB gave me the go-ahead to be discharged on Saturday morning.  I was excited to go home, but also apprehensive because I definitely wasn't feeling 100% and worried about how I'd get in and out of bed at home, not to mention up and down the stairs (we live in a townhouse).  The on-call pediatrician, a very grandfatherly-type, came to check on Ben Friday afternoon, and was surprised that I was being sent home so soon.  He suggested that we stay an extra night and take advantage of the nurse's help.  Deep down I knew that he was right, so we took his advice and extended our stay by another 24 hours.

Time has flown since bringing Ben home.  Tomorrow is his actual due date and he'll already be one month old!  It's been quite an adjustment, but we've had so much help from family and friends to make the transition easier.  I'm sure a lot of people wonder whether I'm able to breastfeed and the answer is no.  My milk never came in and since I'll be getting chemo for the next 3 months, it wouldn't be safe for consumption anyway.  I'm a little sad that I wasn't at least able to try, but in the grand scheme of things I'm just happy that Ben is here and in one piece and he is perfect.  And he wasn't born bald, or radioactive, or with 3 eyes like some people may have secretly worried ;)

Napping in the family cradle, which has been passed around our family since 1967.

First visit to the pediatrician.

First bath (nailed it).

Baby burrito!

First Thanksgiving, 1 week old.

Our sweet little doll.

Brotherly Love

Getting Back on the Chemo Train

On December 9th, I started chemo again, and will be going every Tuesday for 12 consecutive weeks (as of this writing, I've already completed 2 rounds, yay!).  The new drug is Paclitaxel, AKA Taxol.   Possible side effects include: neuropathy (numbness/tingling) in hands and feet that gets progressively worse with each treatment, mouth sores, acid reflux, fatigue, nausea/vomiting, hair loss, joint/muscle pain, low blood count, and loosening of the nailbeds.  Fun stuff!

Before Taxol is administered, I have labs drawn to make sure my blood counts are good. Then, a series of "pre-chemo" drugs are given through the IV, to counteract some of the side effects.  So, my current line-up includes: Benadryl (to prevent allergic reaction), steroids to keep my immune system afloat, Pepcid (for acid reflux/indigestion), and Zofran (for nausea).  The entire process takes about 4 hours from start to finish.  

In a weird way, I'm happy to finally be getting chemo again (or as I now call it, my "day at the spa"), after about a 6-week break. Going that long without actively doing anything to address the cancer was starting to make me nervous.  Now that Ben is here and healthy, I want to bring out the big guns and do everything I can to fight this!  

I'm in a Facebook group for women facing cancer during pregnancy, and while it's an awesome support network with some really incredible women, it's also served as a reminder of the truly awful realities that other families have gone through.  There are women, young women, who have passed away within a few months of having their children because their cancer had spread and nothing else could be done.  It was just too late.  It is absolutely heartbreaking and my mind can't help but wander to places where I don't want it to go. And because I've yet to have any scans to determine whether the cancer has spread, there are a lot of unknowns.  So for now, I just have to trust that my doctors have set me up on a treatment plan that's working, and that there's a light at the end of this shitty tunnel.  Not going to lie, though, it's tiring and sometimes I wish I could just take a time-out for a few minutes and feel "normal" again.

Our Wedding, December 2007.

Chemo "lunch date" on our 7th anniversary=not normal.

Appreciation

Since being diagnosed in July, there have been so many people who've helped us in ways big and small.  Family, friends, neighbors, co-workers, complete strangers.  We've had meals delivered on nights when the last thing I wanted to do is cook dinner, let alone go grocery shopping.  We've been able to have our house cleaned every month, thanks to Jeremy's co-workers pooling their money together (and it's no secret that teachers don't typically have a lot of excess money to pool).  We're lucky to have family members that live a few minutes away that can watch Ben every week while I'm at chemo.  I'm lucky that somehow one year ago I had the foresight to purchase a good insurance plan.  My monthly premium ain't cheap, but boy I've made good use out of it this year.  

It's astonishing how quickly people are willing to jump in and do whatever they can to give us one less thing to worry about.  It's something I give thanks for every day.  At times, Jeremy and I will just look at each other and not even know what to say because we're both so speechless that people can be so incredibly generous.  Case-in-point:  this morning we opened our front door to see a jar full of money with a card attached.  It was left by an anonymous family who wrote that each year they teach their children to save up their spare change, to give to someone in need at the end of the year.  This year, they chose to give it to us.  To that family:  I don't know if you read this blog, but if you do...thank you.  

My sister has a lot to be thankful for as well.  She completed her chemo regimen and recently had surgery to remove her tumor.  Surgery was a success and the margins were clear with no evidence that the cancer spread to her lymph nodes.  Next, she'll be having radiation, and her doctor is very optimistic that she's on the road to remission.  Fingers crossed that this good news continues for her!

Thanks to everyone who takes the time to read this.  And thank you for the continued support and prayers.