I'm still here!

It's been quite a while since my last post. I've often thought about giving a quick update, but life with a toddler kept getting in the way. As anyone with cancer can tell you, if you've ever come across a cancer blog that hasn't been updated in a while, the first thought that crosses your mind is: they must have died. I've had that thought numerous times, in those early days of diagnosis where I spent hours scouring the internet for signs of hope, and unfortunately most of the time that was exactly the case. So in the event that anyone has stumbled upon my blog, searching for hope, I owe it to you to at least give a cyber shout-out saying "I'm still here!" 

Halloween party, October 2016

Sadly, we did lose a special member of our family in 2015. Less than two weeks after Ben's first birthday, we had to put our sweet Charley down. It was probably the hardest thing I've ever done, and we miss him every day. At some point, we'll be ready to adopt another dog, but it'll be really hard to replace him!

The day we said goodbye to Charley. 12/1/15

Moving on to happier news...Ben celebrated his 2nd birthday back in November and just like his 1st birthday, he loved being the center of attention! These days, he's all about trains, racecars, airplanes, trucks, basically anything with wheels that can go, in his words, "really fast." Jungle, farm, and zoo animals are also hot topics. I can give you a long list of lovely adjectives to describe him, but honestly, words just don't do enough justice. If you've spent any amount of time around him (minus those inevitable moments when he's in meltdown mode and patience becomes a real virtue), you know that he's just one special kid. In the words of Bruno Mars, we are #blessed! (Love me some Bruno Mars...)

As far as my ongoing treatment, I continue taking a daily aromatase inhibitor, exemestane, to block production of estrogen (because my cancer loved estrogen). I've also continued with Lupron injections every 3 months, to make sure that my body remains in menopause. After about a year of dealing with hourly hot flashes, I finally decided it was time to complain to my doctor, because I knew other people who took medication to lessen the severity. I was tired of sugarcoating how I felt. It was misery! So, I started on a low dose of Effexor, which...made no difference whatsoever. I upped the dose a little bit, and am happy to report that the hot flashes are way more manageable! They still occur, but aren't as bad (more like "warm flashes"). THANK THE HEAVENS!

I've had two PET scans now, along with annual mammograms and MRI's, and so far they've all been clear. Risk of recurrence is the highest during the first 5 years after treatment, and I'm pretty much at the halfway point right now. It's a very long period of cautious optimism. I see my oncologist every 3 months, my radiation oncologist every year (who recently said my skin is healing fabulously, and doesn't even look like I had radiation), and I "graduated" from seeing my breast surgeon. At one point, I consulted with a plastic surgeon because I've yet to have any reconstruction surgery (ie, still flat as a pancake on one side). But, I wasn't crazy about the doctor and have tabled any surgery plans for now. I'm just not ready or able to take extended time off work for the necessary recovery time. Our monthly health insurance premium now exceeds our mortgage. It's scary to think that costs could get to a point where we can no longer afford it, or that coverage could be dropped altogether due to my dreaded "pre-existing condition" status. Needless to say, I'm quite anxious to see how the new president will handle the healthcare crisis. Because it's bigly.

When I first got cancer, I found an online support group of other women who also went through treatment during pregnancy. Hands down, it was and still remains the greatest resource for me. In 2014, there were about 40 members. Now, there's over 300! Several have died. Many others thought they were in remission for a brief time only to have the cancer spread, forcing them into grueling lifelong treatments. Despite this, we all provide each other with a lot of hope, sharing pictures of our healthy chemo babies and cheering each other on whenever somebody has a clear scan or hits an important milestone. The video below features just a few of us (Ben & I are right around the 7:00 mark).

About a year ago, I contributed a chapter to a book that was written by several "cancer mamas", chronicling different aspects of cancer and pregnancy. It's currently in the process of getting published. We're hoping to put any proceeds toward helping others in our group. I was also honored to have a small part in putting together an informational booklet for Living Beyond Breast Cancer. You can request a free copy or read the online version by clicking here.

Living Beyond Breast Cancer conference, September 2016

My sister (in remission!) & Ben, November 2016

Thank you for reading and following along on this crazy journey!

ONE.

Today was a very special day.  I can't even believe it, but Ben is now a ONE year old!  This blows my mind.  He has grown and changed so much in the past year.  Born a month early and weighing just over six pounds, now he's over 20 lbs and his personality is really starting to take shape.  He gives a huge grin and claps with excitement when you enter his room in the morning.  He waves at everyone and is starting to point at things that interest him. He loves ducks and Mickey Mouse and his gloworm and allllll the books. He's not a fan of being in the car seat for long rides and he is super squiggly during diaper changes.  But he sleeps through the night and eats like a champ and is starting to spontaneously laugh at things and it's pretty much the greatest thing ever.  We had his birthday party last weekend and he hammed it up for everyone.  He discovered the true joy of smashing his face into a cake and being the center of attention as he listened to everybody sing "Happy Birthday." Here are some photos from the past several months:

courtesy of Dusty Slate Co.

I had a follow-up CT scan of my chest in September, and while some fibrous-type stuff (I don't remember the official medical term at the moment) showed up on one side of my lungs, it's most likely a residual result of radiation, and my doctors aren't concerned.  I also had my first MRI, which was clear and not as claustrophobic as I anticipated.  I also had another mammogram and breast ultrasound at some point and though they noted a few small cysts, nothing looked cancerous so I got the all-clear.  Next up is a PET scan the first week of December.  I've never had one before, so I'm a little nervous about it but hopeful that it will give me peace of mind that I remain in remission.

Remission is a wonderful place to be, but it comes with it's share of annoyances.  I continue to have a chronic backache (hoping the PET will ease any fears that this is cancer-related).  The neuropathy in my hands still lingers, making it difficult to type for extended periods of time.  I have to take frequent breaks because my hand will repeatedly fall asleep; sometimes it can take up to 20 minutes to taper off.  This is pretty frustrating when trying to get work done, or when driving, or trying to sleep, as it often wakes me up at night.  Combined with the hot flashes (not to mention 90 degree heat in the middle of NOVEMBER!!), a brain that just isn't as sharp as it used to be, weight gain thanks to my meds, and hair that I'm thankful is growing back but is going through a series of awkward phases, most days I just feel....blah.  But, whenever I start to complain about these things, I remind myself "at least you're not dead," and look at Ben who is most likely doing something cute.  That usually puts things back into perspective pretty quick :)

I also think of the other cancer moms who weren't lucky enough to deal with all of these side effects, who didn't get to see their babies celebrate their first birthday, who didn't deserve to die.  I'm not at all trying to be melodramatic about this...it is unfortunately a sad reality for a lot of young mothers, and it's not fair.  Getting scans every few months is like a morbid game of hot potato; each clear scan is a sigh of relief that you were able to pass the potato and live in relative peace for a few more months.  But there is always a lingering feeling of waiting for the potato to come around again, and hoping the music doesn't stop when it's in your hand.  

I am excited for the future.  Jeremy is about to complete his Master's degree, which will be a HUGE achievement considering everything that's been going on in our life. This summer we're planning to finally take the cruise that we never got to take when I was first diagnosed, and just relax and not worry about anything for a week. Charley continues to require a lot of time and patience; it's a lot of work taking care of him but until he lets us know that he's not happy anymore or is in too much pain, we will continue to love him (and let him lick the plate).

Hope everyone has a happy Thanksgiving!  Thanks for taking the time to read :)

-Dee

Full Steam Ahead

It's been almost two months since my last update, and I'm happy to report that life has been fairly uneventful.  Busy, yes!  But, uneventful.  On June 2nd, I had a CT Scan and bone scan to check for any possible spread of the cancer to my bones, lungs, and liver.  The results were clear!  There were a few tiny spots on my lungs, but they appear to be related to a chest cold I was getting over; I'll be re-checked in September just to be sure. 

I'll also be getting a mammogram in July, and at some point my port will be removed, once my doctors decide that it's unlikely I'll have to go back on chemo.  I'm now averaging about one doctor's appointment per week, which is amazing! It's nice not to spend the better part of the week in a waiting room.

If breast cancer spreads elsewhere in the body, it usually travels to the bones, brain, lungs, or liver. At that point, it's called "stage 4" or metastatic breast cancer and it is incurable.  Because I'm "stage 3" (meaning that the cancer has spread to the lymph nodes), my doctors will keep close watch on these other areas, especially over the next several years.  Cancer recurrence is much more likely to happen within the first five years after diagnosis.  There are times I want to fast-forward to the year 2020 just to get out of this "danger zone", but at the same time I want the clock to slow down because obviously I want to enjoy Ben being so little.  So, I try to be patient, enjoy each day as much as possible, and not get stressed by trivial things.

Beep Beep!

A few weeks ago, I started the long-term medication regimen to suppress my hormones and basically go into menopause.  This involves an injection (Lupron) every three months at my oncologist's office, as well as a daily oral medication (Aromasin/exemestane).  My doctor suggested I wait a week after the initial injection, to see how my body responds to just the Lupron.  The main side effects I experienced were muscle aches and fatigue.  A week later, I added the exemestane to the mix.  The muscle aches and fatigue have been kicked up a few notches, and I also have more frequent headaches and some difficulty sleeping.  I basically feel like I've aged about 20 years and am living in someone else's body.  I'm waiting for the hot flashes but so far those haven't hit me yet, though living through a humid Florida summer is punishment enough.  One day I got my period, which was a bit alarming because umm, as far as I understand, being in menopause means this shouldn't happen anymore???  I called my oncologist who instructed me to call him back "if it doesn't stop."  He's such a dude sometimes. (It eventually stopped).

I had a 6-week post-radiation followup with my radiation oncologist and brought Jeremy and Ben along, since they hadn't met her before.  Ben was quite a hit with the staff, I'm pretty sure one of the nurses wanted to kidnap him.  The doctor noticed a small red bump within the "radiation zone" and said that it appeared to be a cyst.  Because there was a chance it could be infected, she wanted me to be seen by my surgeon later that afternoon, who'd be able to remove it if needed.  So this quick follow-up visit turned into a long day, as I was sent to the surgeon's office without an appointment (translation: I had to wait about 4 hours).  She gave me a shot of lidocane and basically carved it out of my chest wall, and that was that.  

I'm still dealing with neuropathy in my hands, which feels like a permanent numbness/tingling across my fingertips.  I've become very skilled at dropping various items multiple times a day.  So far, I haven't dropped the baby (!!) but there are times when I've suddenly had to put him down when I started to lose my grip.  This side effect can be permanent for some people, but I'm hoping it will taper off as time goes on.  Until then, it's butterfinger city up in here!

I took a gander at my health insurance statement the other day and quickly realized that insurance is a necessary evil.  A single Lupron injection?  $5600.  And that teeny tiny pill I'll be taking every day for the next ten years?  $11 a pop.  I couldn't believe when I went to the pharmacy and was told that I didn't owe anything.  My monthly premium is crazy expensive, but I've racked up over $80,000 in claims just in the past five months and so far I haven't had to pull a Walter White.  I consider this a win.

Ben is now a SEVEN MONTH OLD.  Whaaaaat?  He's been experimenting with all sorts of new foods.  His current favorites are sweet potatoes (how could he not love those), apples, and squash.  Least favs are peas and prunes.  I always thought you had to be at least 80-years-old to truly enjoy prunes, so no real surprise there.  

Sweet Potato eating sweet potatoes :)

At his 6 month check-up he weighed 15.4 lbs; a bit on the small side but his height and head circumference are average.  He basically has a little waist and a big noggin. :)

May 2015

June 2015

Rainy pajama morning

My two loves

Charley is about the same, still chugging along on two legs and a lot of meds.  We recently hoisted him into the car for a coffee run because he never gets to go on rides anymore (one of his greatest joys in life) and he was so excited when he realized he wasn't going to the vet. He still makes his way to the nursery every morning so he doesn't miss out on anything.

Now that I'm essentially in the "maintenance phase" of treatment, I might not update as often.  But, thank you for taking the time to read.  This blog has given me a place to record everything that's happened over the past year...a crazy chapter that has simultaneously been the greatest and the most terrifying year ever.  I hope that my story might help someone dealing with a similar diagnosis, to know that they aren't alone, and that there is always a light at the end of the tunnel.  

Dee

Goodbye Radiation, Hello...Menopause???

On May 1st, I completed my 30th and final radiation treatment.  Whew!  The last two weeks of treatment became quite uncomfortable as my skin started to burn and feel incredibly tight.  Today my skin is finally starting to return to normal.  My radiation oncologist commented that with the hefty dose of radiation I got, there was "no way that cancer would ever come back in the treated area, guaranteed."  I know there are no guarantees in life, but it sure was nice to hear the confidence in her voice.

The main "leftover" effect I have from chemo is neuropathy in my hands, especially my left hand.  It basically feels like it's asleep most of the time, which makes certain tasks like typing, grabbing, or carrying things a little tricky.  It gets worse at night, and will wake me up sometimes.  Flexing my fingers repeatedly helps a little bit but it never completely goes away.  I also experienced my eyebrows and eyelashes falling out about a month post-chemo.  I didn't expect it to happen so late in the game but they grew back almost as quickly as they fell out.  Weird!

Jeremy and I decided we were long overdue for a break, so it worked out nicely that the end of my radiation coincided with a 1-week hiatus he had between his graduate courses.  The opportunity to take a break, physically and mentally, was completely necessary.  We've been treading water for the past 10 months.  Sometimes you don't realize just how much stress you're under until you step away from it for few moments.  

We visited our happy place, where we were married over 7 years ago.  It was a reminder that we're in this together, for better or for worse.  I am truly proud of us; some days I don't know how we keep up the pace but we're doing it, one day at a time.

Our first 2 nights away from Ben and guess what...everyone survived!  Thank you Nana, Grampy, and Mimi for watching the boys :)

In a few weeks, I'm scheduled to have a CT scan and a bone scan to check for any rogue cancer cells.  Hopefully I'll get some peace of mind that my recurrent backaches are nothing major.  And in a month or so, I'll have a PET scan, which is essentially the "full body" scan to determine if there's any evidence of cancer.  If it's done too soon after completing radiation, it can result in false positives, hence the delay.  I'm hopeful and anxious for the moment I can say with some degree of certainty that I'm "cancer free."  

Over the past month, I've had some time to decide how to approach the next phase of treatment: hormone suppression.  In my last post, I mentioned some of my options, but I've had to do some additional homework to figure out which is right for me.

In order to decrease the odds of future cancer recurrence, my body must go into menopause.  Because my particular cancer is fueled by estrogen, I have to stop producing it.  This can be done in two ways:  chemical menopause (Lupron injections to suppress the ovaries from functioning) or surgically-induced menopause (removing the ovaries and fallopian tubes). 

If I choose the lupron injections, I'll get them every 3 months for the next 10 years.  At that point, it's possible that my ovaries would resume normal functioning.  If I choose surgery, there's no need for injections because my ovaries will be permanently removed. With either option, I'll also take a daily oral medication, called an aromatase-inhibitor.  And with both options, I'll experience all of the lovely side effects of menopause:  hot flashes, mood swings, bloating/weight gain, increased risk of osteoporosis (your bones need estrogen to stay strong), increased risk of heart disease, and other fun stuff.  A normal woman might be eligible to take certain medications (ie hormone therapy) to lessen the side effects, but any type of hormone therapy will be off the table in my case.

I had a consultation with my OB to discuss the pros/cons of surgery.  It's typically an outpatient laparoscopic procedure with an average recovery time of two weeks.  My OB does these all the time, but I'd probably be her youngest patient.

The injections are given by my oncologist 4 times per year, which seems simple enough.  However, I've heard from other women who've been on Lupron and some have referred to it as "the devil"...so...there's that.

Because at this point I'm just not ready to go through another surgery, I've decided to start with the Lupron injections.  If at any time I decide to move forward with the surgery, I can.  I learned from my oncologist that one option isn't significantly better or more effective than the other.  

There's no way to predict how extreme the side effects will be.  Maybe I'll get lucky and only have minimal discomfort.  Or perhaps I'll morph into a sweaty mega-bitch with brittle bones and heart disease!  I'm sure the reality will be somewhere in-between...I'm just having a hard time accepting the fact that no matter how you slice it, this is going to be a lifelong thing.

Chemical menopause means I won't be able to become pregnant for at least the next 10 years, so my OB referred me to a fertility specialist to make sure I was aware of my options  (or lack thereof).  Long story short, it would've been ideal to retrieve some of my eggs before I went through 16 rounds of chemo, but I was kinda pregnant at the time so that wasn't exactly a feasible option.  I could still attempt to retrieve them at this point, but the specialist feels that it's unlikely they're still viable, due to the repeated exposure to chemo.  Also, the retrieval process involves the use of hormones, which again would not be safe to administer in my case.  

As much as I'd love for Ben to have a sibling someday, I don't think it'd be wise to go through another pregnancy ever again (plus I'd be at least 42 years old...).  And anyways, we kiiiiinda hit it out of the park with Sweet Potato.  

Needless to say, I have to smile and nod and cringe to myself when people innocently ask, "So, are ya ready for another one yet?"  I suppose adoption is a future possibility but that requires a bank account that hasn't had it's ass kicked...

Speaking of things that kick ass, Ben is now 5 and 1/2 months old and getting cuter by the minute, even if you're not a Red Sox fan.

He has two teeth (!!) and sleeps about 10-11 hours every night (!!!!).  His current interests include chewing on his hands, feet, blankets, clothes, crinkly books, every toy he owns, and anything else that comes within an inch of his face.  

Our dog Charley is about the same since my last update.  We took him to see a veterinary oncologist, just to hear what they had to say.  Basically, we could "try" radiation to shrink the tumor, but the doctor has no idea whether it'd work or not.  It's a complete crapshoot, it's incredibly expensive, and it would involve driving him to the vet 45 minutes each way, five days a week for an entire month.  He'd have to be sedated every day. Every day!   Not feasible.

We've decided to just continue keeping him comfortable.  I was concerned that he might be experiencing a lot of pain, but the vet thinks it's more like a chronic ache.  He'll still scoot himself around the house when he really wants to; every morning when I feed Ben, he drags himself into the nursery just to be near us. Dogged determination.  We also assist him by using a harness to hoist up his hind legs, which helps tremendously.  He continues to get a lot of pain meds and steroids...he's an official addict now.  The moment he hears you open the medication bottle he perks right up.  He still eats and sleeps normally...so until we feel that his quality of life is really diminishing, we're doing as much as we can for him.

Finally, for those who have asked, my sister is doing great!  Also, my mother-in-law has been feeling a lot better.  She was offered a temporary teaching position until the end of the school year, and will continue her search for employment after that.  Thank you for continuing to keep them both in your thoughts and prayers :)

Thanks for reading, 

Dee

Cancer Sucks

Since my last update, I've now completed 14 radiation treatments which means I'm just about halfway finished.  I'm SO glad I chose a facility close to home because I think by this point a long drive would start wearing on me.  The whole process is very efficient; I even have my own scan card that buzzes me in the door so I can head straight back to the changing area with barely any wait at all.  Once you go into the treatment room, there are usually about 3 technicians ready to get you in place.  I no sooner lay down before they start arranging everything and checking the computer to make sure everything is lined up correctly.  Then they all leave the room and I just lie still while the machine moves around me.  

Once a week I also meet with the radiation oncologist.  So far, the only visible symptom is redness around the target area, which is starting to resemble the state of Ohio.  She gave me some special lotion to use on the area three times a day.  One day I noticed a lump under my armpit which of course had me thinking the worst.  But when the doctor checked it, she said that it was something called "tendon cording" which is a common side effect when a lot of lymph nodes are removed.  Not a huge deal to worry about, thank goodness.  

So far, the most difficult part of radiation is laying completely still.  It seems so easy at first, but it quickly becomes a real battle to stick it out!   One of the nurses warned me that if I moved so much as one millimeter, they'd have to start all over.  The first day took longer than usual so they could check and re-check their measurements, and I couldn't move for almost 30 minutes.  Pure torture!  But since then, most treatments are over in about 10 minutes which is much more manageable.  Also, my leftover side effects from chemo are winding down.  The hot flashes have subsided (thank God!!).  I still have a lot of back pain, though not sure what's causing it.

A few weeks ago I had a routine appointment with the medical oncologist.  We discussed starting hormone therapy once I'm done with radiation.  He explained that in the time since my diagnosis last summer, new studies were released that have changed how they treat pre-menopausal women.  They used to suggest a medication called Tamoxifen, which you would take daily for 5 or 10 years.  However, new research shows that women have less chance of recurrence if they combine daily medication with ovary suppression.  Ovary suppression can be obtained by getting an injection every couple months, or you can just have your ovaries removed surgically, Angelina Jolie style.  The data suggests that removing the ovaries combined with meds (called aromatase inhibitors) results in the best outcome.  I'd like to put all my eggs in the "don't die" basket, so this is the option I'm leaning toward.  But, this would mean no more children and I'd be put into menopause. I'm ok with that right now, but I'm not so sure how Future Dee feels about it.

Easter weekend 2015

Speaking of children, Sweet Potato is approaching five months and is still happy and healthy as can be.  At his four-month visit to the pediatrician, he weighed just over 13 lbs and was 24.5 inches, which puts him in the 10th percentile for height/weight.  He's still a little guy but is slowly working his way up the growth charts :)

Now the part I didn't want to write about:  an update on our 10-year-old Australian Shepherd mix, Charley.  

Charley has cancer.

You might recall that a few months ago, he started to have trouble using his hind legs. We started him on a treatment plan of medication and lots of rest.  He was basically confined to a corner of the house for 6 weeks straight, aside from going outside to use the bathroom three times a day.  For this entire time we made sure that someone was home with him 24/7, so that he didn't try to injure himself.  It was a really difficult plan to stick to, but we decided if we were going to do it, we wanted to do it right.  But as the weeks went on, taking care of him became more work than taking care of the baby.  Our life started to rotate around him and the stress was wearing on all of us (not like we aren't already dealing with multiple other stressors).  And by the end of the six weeks, we accepted the fact that Charley didn't make any progress at all.

We took him to a follow-up visit with the vet and found ourselves at a crossroads:  either give him stronger meds (he was already taking meds 4x per day) and continue keeping him confined indefinitely, or cough up thousands of dollars (that we simply don't have) to finally figure out what's wrong.  

We ultimately made the decision to move forward with the series of tests suggested by a veterinary neurologist.  If you're not a dog lover, you might think it's crazy to go to such great lengths for a pet.  But I don't think I could live with myself if I put Charley to sleep only to find out that something could have been done to fix the problem.  Every other part of his body is in perfect health (and believe me, we know this for a fact because he's had almost every test in the book!).  

He has an atypical tumor in his spinal cord and there's not much that can be done about it. Radiation might be an option, but it's doubtful that treatment would restore his ability to walk independently.  If he can no longer have a good quality of life, then I feel like treatment would do more harm than good.  For now, he's not in any pain and is happy to be back home resting with us.  

There are so many things in life right now that need my attention:  my own health, Charley, the baby, paying bills, my clients at work...the list goes on.   Sometimes I don't know where to start and wish I could just stay in bed. Please keep Charley in your prayers. He's my best friend.

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.