Day 300 - Medicine

This blog has been great medicine for me.  It has helped me organize my thoughts, recognize my feelings, and cope with my diagnosis and subsequent treatment.  The blog has been an important part of the past 300 days, and I am grateful for this space.  It's time to wrap it up, though. I actually felt ready to stop posting yesterday, but just couldn't end on Day 299 (I'm not that barbaric).  It's Day 300, a perfect day to shut down shop.

I've learned so much over the past 300 days, some lessons that I could have gone a lifetime without knowing, but I've also learned some really valuable things.  I'm not invincible, none of us are.  That is something that I've always known, intellectually, but I got a really heavy dose of it this year.  I'm surrounded by love and support, and I am so fortunate for that.  This path has not been lonely for me as a family member or friend was always a phone call or even a room/couch length away.  Some people turn in and hunker down when a major life event comes along, and that is fine.  I reached out, though, and summoned the team.  My team is incredible.

I appreciate my child more than I ever did.  The love that I have for him is truly overwhelming.  Yes, he pushes my buttons, and I lose my patience at times (I am only human after all), but I find myself more patient and more understanding than I once was.  I still sneak into his room and kiss his sweet face every night before I go to bed, and I count my blessings every time I hear him laugh. He is utterly delightful, and I am so lucky to be his mom.  I am not sure if he will ever understand the depth of my love for him, and that is ok. I know how deep my love runs.

I am so incredibly grateful for my husband.  He has seen sides of me that neither of us knew existed and his love and caring has never waivered.  He has, quite literally, picked me up when I was down and did everything in his power to help me in any and every way. He has felt incredibly helpless this year, but he has helped me more than he knows.  Having a spouse with significant medical needs is not easy (I imagine), and he has worked hard to keep things afloat in our household. I love him so very much.

I could go on and on and on about all of the reasons that I have to be grateful and could mention what I love and cherish about each person in my life, but that would take forever.  Hopefully those who I love know it as I've tried to be much more open with my feelings.  Can anyone really hear how loved he/she is enough?  I don't think so.

I don't know what the future holds (and I really never did), but I have a lot of hope for a long and healthy life.  I will never know why cancer chose me.  It will be one of the greatest mysteries of my life, but I know that I will work diligently to help others though my experience as I think that I have a lot to offer in that area.  I hope that people will reach out to me for support and help and will offer my contact information to others who may need help. I will be one of the "cancer experts" in my circle, and that is ok as I can truly empathize.

Finally, thank you to all who have read my blog over the past 300 days.  It was not always terribly uplifting, but it provided a real glimpse into my life which has been very challenging this year.  I've experienced some of the lowest lows and some very high highs and have willingly shared them.  Sharing this experience has been important to me, and I hope that anyone reading has been able to better understand where I've been on any given day. I appreciate you walking this road with me, and I am grateful for every single cheer, prayer, tear, bit of strength that you have sent my way.  Those gestures and offers of support mean more than you will ever know.

Saying "thank you" seems insufficient to express my gratitude, but those are the words that I have.

Day 299 - Flip

My hair is a disaster.  Trust me, I'm not complaining because I am glad to have hair (oh the things that we say in Cancerland), but my hair has taken on a mind of its own.  The back is especially wavy, curly, and flippy.  I can't decide what it is going to do, but it certainly is not playing nicely right now.

As long as I keep product in my hair, it behaves a little bit better, but yikes.  I am getting it cut again in a week and a half so hopefully my hair stylist can help tame the mane a little bit.  If he tells me that I need to start blow drying it, though, I will just stick with the crazy hair.  I refuse to blow dry hair that is only 2-3 inches long.

Day 298 - Repeat

I just realized that I used a repeat post title, Sunday Funday, on days 130 and 221.  I feel like such a failure.  Kidding, of course, but I thought that I had an original post for each of the last 298 days.  Oh well..can't change it now.

The Thanksgiving long weekend has officially come to a close. It was a great one full of fun, family and friends.  We all had a really nice time, and it will be hard to get back into the swing of things tomorrow, as is typical after a long weekend.  Such is life.

Day 297 - Hello

I'm a bit late to the party on this (as is typical),  but I cannot get Adele's song Hello out of my head.  I've been waking around singing it, much to Mike's dismay, and I've pulled it up on my phone several times.  She's really got some pipes.

We started our Christmas decorating today - lights are up outside, and we have our tree.  I love this time of year.

Day 296 - Enjoy

Not to get too deep here, but since my diagnosis, I've found that I take the time to enjoy things more. I slow down, have conversations, laugh more, and reflect on simpler things that make me happy.  For example, today I got to catch up with some family members, and I loved the simple act of sitting and talking.  It feels like such a treat to stop and just visit for a little while.

I've had to slow down a lot this year, whether it be sitting at chemo or dealing with the after shock of chemo or surgery, and it is ok to slow down.  It is ok to appreciate the simple art of conversation, and it is wonderful to recognize how special those moments are. I am very guilty of rushing around and trying to come up with things to do, but it is often the unscheduled and unplanned times that end up being the best.

Day 295 - Thankful

I have so many reasons to be thankful this year.  In fact, a post listing those reasons would probably take forever to write.  The list is long, and I run through it regularly but focused on it more today than usual.  On the top of my list of reasons to be thankful is my health.  Being healthy is the basis upon which a lot of other things are possible.

I think that it is safe to say that I appreciated my health before my diagnosis, but I didn't really know what that meant.  It's hard to describe. Yes, I was glad to be healthy, but I had never known otherwise so could not really understand how grateful I should have been.

I've still got some work to do to get back into shape physically (and emotionally), but I am so very thankful that I have the opportunity to do that. Not everyone is given that opportunity, and I am profoundly grateful.  More grateful than I can possibly put into words.

I'm thankful today and every day.

Day 294 - Angst

A member of one of my Facebook groups was diagnosed with TNBC during the first trimester of her second pregnancy (I am pretty sure that I have referenced her before).  She had a mastectomy first since she could not receive chemo until her second trimester.  She had chemo while pregnant...I truly cannot imagine.  Because she had surgery first, she does not know how well her tumor responded to chemo.  She could have had a complete response or she may not have, but she will never know.

She is so filled with angst.  All of her posts are her panicking about one symptom or another.  Today, she is worried about a rash that she has on her chest and is wondering if she has skin mets.  Since I've "known" her, she has had a multitude of tests to check various symptoms that she has experienced.  My heart breaks for her.  She is in therapy, on medication and actually tries to stay away from the Facebook groups as much as she can.  I wish that there was something that any one of us could say to make her feel better, but there is not.  She is continually waiting for the other shoe to drop, and I hope and pray that it never does. 

In her post today about her fear of skin mets, someone had a really great response to her.  She said something along the lines of "Stop spending your time thinking about the worst case scenario.  I was re-diagnosed as stage 4 about a year after my treatment ended, and I am glad that I did not spend my cancer-free year in a state of panic."  That is good advice and advice that can be applied across so many situations.  

Stop being so concerned about what the future may or may not hold because you will miss out on some great days.  I love that advice and try to apply it to my own life.  We do not know what the future will bring (with anything) so we should enjoy what we have and stop either wishing or fearing life away. 

My therapist and I have talked about this subject on a few occasions, and the comment from my group member really drove that point home.  She has great perspective, and I am glad that she took the time to share it. I hope that her medical team is able to keep the beast at bay for her for a long long time (a wish that I have for everyone impacted by this disease).

Day 293 - Off

I am taking another vacation day tomorrow to have an extra long weekend again.  I am looking forward to the downtime and to a few fun activities that we have planned for the holiday.  If the vacation that I have requested gets approved, I will only work 2 full weeks during the month of December.

Part of me feels slightly guilty about it because I have needed so much time this year, but I have the time to take, and my work is getting done so that helps alleviate the guilt some.  With all that has gone on this year, you'd think that I'd have learned to let go of some unnecessary guilt, but I am still working on that.

As always, I'm a work in progress.  It's probably fair to say that we all are.

Day 292 - Internalize

It is hard to not internalize other people's problems.  I've become a member of several cancer-related Facebook groups, and there are often posts that make me sad and scared. These groups have done much more good for me than harm, but I have to remember to be empathetic without projecting others' issues onto me.  I hope that does not sound cold. It's not meant to be.

We are all different. Our diagnoses are different, and the way that we handle treatment and life after treatment is different.  I am very good at remembering this 90% of the time, and there is nothing specific that is triggering this post, in fact.  I've just been thinking about this topic recently.

Day 291 - Accomplished

I got a lot accomplished today - gym, grocery store, bounce castles with Henry, and some volunteer work.  I originally planned for a 10am trip to the gym but figured that stores would be packed by the time the class ended at 11 so switched to an earlier class at 8:45am.

When I got home, Henry requested a trip to the bounce castle place, and we had no other plans so I obliged.  He made a few friends and had a sweaty blast running around. I could tell where he was at any given time because he was growling like a dinosaur almost the whole time he was there.  Kids are so funny.

This afternoon, I did some work for METAvivor.  I am working on a volunteer training program for them and got a program outline off to my contact on the organization's board of directors.  I have spent the past few months researching best practices and gathering information on other volunteer training programs so was able to compile my recommendations and a basic program outline and send it along.

If I'm on the right track, I'll start filling in the outline with more robust information.  I am so glad to be able to help this organization, and I hope to hear about another volunteer opportunity sometime next month.

Day 290 - Reunited

In August, we learned that Henry's best friend at his preschool got into a 4k program at a local public school.  His mom teaches at that school so him going was a no-brainer.  Henry has not stopped talking about how much he misses his friend since he left the school in August so I emailed his mom to see if they could meet us at a local playground.

The stars aligned, and we were able to catch up this morning. We were at the playground for almost 3 hours, and Henry came home a sweaty, dirty, happy mess.  He was so happy to see his friend, and the feeling was mutual.  We left the playground vowing to get the two boys together more often.  It was so cute to watch them play and listen to them talk to each other.

Day 289 - Giggle

Henry's laugh is one of my favorite sounds in the world.  He's got an infectious and uninhibited belly laugh that always makes me laugh with him.  I was putting him to bed last night, and we were being really silly.  The sillier I got, the harder he laughed, and he harder I laughed.

When I got downstairs after Henry was tucked in, I got a little bit scolded for getting Henry wound up before bedtime.  The old me would have agreed that I should not be silly with him like that before bed, but the new me does not care.  I love the sound of his laughter, and if laughing causes him to fall asleep 5 minutes later than he would have otherwise, then so be it.  Bring the giggles.

Day 288 - TMI

I am happy to report that my chemo-induced menopause has ended.  Sparing details, I am really happy about this.  Menopause at the age of 34 would bring a whole host of other problems and concerns so I am happy to report that I can cross that off of my list of worries.

As a quick follow up to yesterday's post, I called to pay my radiation bill that I mentioned yesterday and had trouble paying through the hospital's automated system so needed to speak to a representative who told me that my insurance company conducted an additional audit of the bill.  He told me to wait for a new bill to be mailed to me but that the new amount owed would be in the neighborhood of $280.  Even better!  I am so grateful for my fantastic health insurance.

Day 287 - Insurance

My company's open enrollment period for next year's medical, dental, and vision insurance started today. Before this year, I had never really thought all that much about insurance other than "do I have it and how much will prescription medications cost."  When I was pregnant with Henry, I gave my insurance a slightly more critical look, but only to know my out of pocket max and whether or not anesthesia was covered.

That changed this year.  During our open enrollment meeting last year, I remember my boss saying "we are only offering one medical insurance option this year, but it is a really good plan."  I didn't think all that much about that comment back then, but I thought about it all of the time this year.  My insurance is really good.  Really good.  Without getting into too many specifics or talking too much about the finances of cancer, I still have not met my out of pocket max for the year and will provide one example of how great my coverage has been.  The itemized bill for my 33 radiation treatments was over $19,000. I owe $459 of that.

$459 is still a healthy check to write (I don't really write checks, but that sounds better than "healthy card payment to make online"), but $459 is quite do-able compared to what it could have been.  I have a lot of other examples of bills like that but won't bore you with details.  My insurance is fantastic, and I am so very grateful that my company took the time to research and provide us with such an excellent plan.

I am also so happy to report that the plan has not changed for the 2016 calendar year.  My company did add a lower-cost plan for next year as an option for those who do not anticipate needing regular medical care (does anyone really ever anticipate that).  I elected to keep us all on the current plan that I know is really good.  I'd rather have excellent coverage and anticipate that I will always opt for the higher-premium/better-coverage plans moving forward.

I'm very grateful for wonderful health insurance.

Day 286 - Victor

Yesterday, my surgeon said that he advises patients to get to the point in which they stop being a "victim" of cancer and a "victor" over cancer. I think that is good advice and advice that is easier said than actually taken.  That mentality is something to reach for in the future, but is not readily attainable.

I also know that I said that I would stop writing in this blog weeks ago, and I was not quite ready to do so, but I am getting closer. I don't know why I am having trouble letting go of this, but I don't really have all that much to say these days.  It's time to wrap it up, and I hope to be able to emotionally make that happen soon.

Day 285 - Follow Up

I saw my surgeon for a follow up appointment this afternoon, and I usually feel a lot better after talking to him (with the exception of my ultrasound appointment on Feb. 3).  He took a lot of time to talk to me during my appointment and also did a very thorough exam.  I mainly wanted him to tell me what I should be looking for/feeling for during self-exams.  He told me that my left side would probably always feel different from the way that it did before cancer and that it would probably always feel different from my right side.

It does, and I am glad to know that the differences are normal and expected.  He also told me that I should be working very hard to move on with the caveat that "I am not sure how well I would move on so just do the best that you can."  He said that he'd like for me to get to the point in which I only think about cancer 4-6 times a year when I go for follow up appointments.  I don't see that happening anytime in the near future, but it is a good goal.

I also have an appointment for a mammogram in February.  My hospital system just started using 3D mammograms last month, which are much better for women with dense breast tissue (me).  I will have a 3D mammo that my surgeon and I will discuss before determining if I need additional imaging as part of my long-term care.  If the 3D mammogram is not as clear as we would like for it to be, I will add ultrasounds and MRIs to the treatment plan. I will be interested to see how the 3D mammogram works for me.

Day 284 - Magical

Today was pretty magical. We started the day with a walk on the beach toward a local lighthouse.  Henry and I did that walk a month or so ago with some friends, and I knew that Mike and our friends from Philadelphia would love it.  They did.  It was a little cool on the beach but bright and sunny.  Perfect fall day.

This evening, my friend Kristin and I took Henry and her 2.5-year old son to the a holiday lights festival.  I know that it seems early for Christmas stuff, but the lights festival opened this weekend, and I figured that it would not be crowded and that the kids would love it. I was right on both counts.  We rode a train through an "enchanted forrest," had hot cocoa in Santa's Village, and drove through the rest of the park to see the light displays.  This park does an incredible job on the holiday lights, and I am so glad that we went to see it.  Henry's voice was basically at a shout the whole night.  He could barely contain his excitement.

Day 283 - Bounce

Today was so much fun.  It was full of friends and full of kids playing.  Our friends from Philly are here, and we went to the Farmers Market this morning to hit the bounce castles and food vendors.  Henry and his buddy Nolan played hard at the market in the bounce castles.  Watching them was very entertaining.

This evening, our local friends and their two kids came over to join the fun, and we all had a shrimp boil.  All of the kids who could play played the night away, and we had great food and even better company. I loved today.

Day 282 - Shooting Star

We were sitting around a fire in our back yard late tonight, and we could see tons of stars in the sky.  I saw a really bright shooting star as I sat there and looked at the sky. You might imagine my wish.

Day 281 - Slow

Years ago (+/- 10), we lived in Richmond, VA.  During some of the time that we lived there, I participated in a workout called Seal Team PT.  It was (and probably still is) taught by a former Navy Seal.  There were two class times each day - approximately 5:30am or 6:00pm, and I always went to the morning class.  It was a great workout though a little crazy at times.  We would bear crawl up hills, carry people on our backs, run with a giant inflatable boat over our heads, all very Seal-like. There was also a lot of running.  A lot. I was in great shape.

As I've said before, I have never been a strong runner.  It has always been my exercise hurdle that I have never truly gotten over.  Yes, I have run, but it's never been particularly easy or enjoyable for me.  One morning during Seal Team PT, we were running (and running) halfway across downtown Richmond  It seemed like all we did that morning was run.

Like usual, I was in the back of the pack and was struggling mightily.  Just I was slowing my steps down to a walk, someone from the group ran up behind me, grabbed a fistful of the jacket that I had on and said "you can slow down but don't stop running."  I have no idea who the woman was who said that to me, but it made a big impact on me that day and has stuck with me over the years.  I picked my cadence back up to a run but slowed my pace, got my breathing under control, and ran the rest of the way.

I haven't always heeded her advice, but it is great advice. If you want to be good at something, then you have to do it.  You have to keep going even if you have to go really slowly.  I thought about that as I was trudging through some run/walk intervals this morning.  I did not feel very skilled or efficient during the running parts, but I ran.  I didn't stop running during those times though I wanted to many times.

I've had to slow my pace a lot of times this year.  There have been days when I could barely crawl, much less run, but I kept on crawling (metaphorically of course).  Stopping was never an option, but slowing down so that I could keep going happened often.

Speaking of slowing down, I am finally taking some days off of work. I was off today and will not be going back to work until Wednesday.  I exercised, saw my therapist, and went to the spa today. It was a very "Real Housewives of Charleston" day, and I loved it.  My colleagues gave me a spa gift certificate during the welcome back party that they had for me in Los Angeles, and I enjoyed cashing it in today!

Day 280 - Baby

Some of our dear friends are coming to visit later this week and are staying for a handful of days.  They are bringing their 2.5-year old and 2-month old children with them, and I cannot wait to see all of them.  I am excited to catch up, see Henry and their little boy play, and get my hands on that baby! 

I love babies...always have.  I think that it is unlikely that we will have another child.  Whether I will be able to have another child is unclear at this point (chemo puts you into menopause, and sometimes it's permanent), and whether we want to have another child also remains unclear.  Until we have clarity, I will enjoy snuggling other people's babies and holding them so that their parents can eat a meal in peace.

Day 279 - Morning

Henry tends to jump out of bed in the morning ready to roll and with a lot of energy.  He's a morning person, much like his mom.  Though I generally have to wake him up for school, once he is awake, he's moving.  This morning, I went into his room, turned off his white noise machine, and sat in his rocking chair until he woke up.  He got out of bed, came right over to the rocking chair, and snuggled with me for a good 5 minutes while he woke up.

It is very uncharacteristic, and I enjoyed every second of it.  He is very affectionate, but still moments are rare.  I closed my eyes and breathed in the smell of his hair and felt his chest rise and fall.  It was such an incredible way to start the day.  He and I barely fit in that chair anymore, but I'll squeeze anytime he wants to rock.

I loved this morning.

Day 278 - Trade

As I've said many times before, aches and pains freak me out.  Someone who has not had cancer is likely to approach a minor ache or pain quite differently than someone who has received a cancer diagnosis.  Both during and after my treatment, I've had some freak out moments due to aches, pains, and strange sensations:

1. Strange feeling in the upper right-hand side of my abdomen. I asked for an ultrasound that was clear. That sensation has not resurfaced. 
2. Full feeling in my ears due to what was determined as eustachian tube dysfunction. I took Mucinex and Flonase for a while to dry out my sinuses,  and that feeling went away.
3. Slight cough and tight feeling in my chest.  This occurred about a week after Henry came home with a really bad cough/runny nose so the rational side of me knew that I had a minor chest cold, but the emotional side of me freaked out.  Freaked out.  I did not get any tests done, though, as I am trying to keep the freak outs in check. The cough and tightness both went away partially thanks to a few bottles of Zicam (which is amazing by the way).
4. Lower back pain.  I woke up with lower back pain one morning before I went to California.  It lasted for a few days then went away while we were in California.  It came back once I got home.  I feel quite confident that the pain is due to our kind of crappy mattress so I am going to sleep in a different bed for a few nights.  If that does not do the trick, I'll mention the pain to my surgeon when I see him for a follow up appointment next week. 

It seems like one pain gets traded for another, and one freak out moment gets traded for the next.  This is a very common thing to happen after cancer treatment, and I know that intellectually.  Knowing that and managing my emotions accordingly is a work in process.  It sucks, but I knew that it was coming. I am fine, but I wish that I did not fear my body betraying me again.  

Day 277 - Arms

Anyone who has had lymph nodes removed is at risk for something called lymphedema.  Lymphedema occurs when the lymphatic system cannot drain excess fluid, and it causes painful swelling, numbness, and reduced range of motion.  Generally speaking, the more lymph nodes removed, the greater the risk for developing lymphedema.

I had 3 lymph nodes removed from under my left arm (out of probably 30ish) so my risk for developing lymphedema is low, but my doctors still request that I remain cautious with my left arm as strain or trauma can increase the chances of lymph-related complications.  Part of that caution was taking it WAY easy on my upper body in the gym during radiation and for at least a month after.  Being the good patient that I am, I took that advice and barely used my upper body at the gym.  My trainers modified each workout for me to include very light upper body exercises or to avoid my upper body entirely.

Today was the first day that I really exercised my upper body since July 16 (the day before my surgery).  Thankfully, it was a pretty light day in that department, but I did do pushups and some other exercises that I previously avoided for the first time today.  I will surely be sore tomorrow, but it felt good to be able to participate in the workout without significant restrictions or modifications.

Slowly, slowly small pieces of life before cancer are starting to resurface, and I am happy to find them.  I never know when I will find one of those pieces.

Day 276 - Bull

We went to a festival at a local winery today.  Before I go too much further, SC does not have the climate for wine. The only grapes that will grow are muscadine grapes that are super sweet and translate into sugary wine.  We don't go to this winery for the wine, but their annual "Blessing of the Vines" festival is pretty fun.  We don't go every year but make our way out there when the festival works for our schedule. We did have some wine while we were there, but it was only because no other booze was offered for sale.

This year's festival featured a mechanical bull. Bull rides were $5 and benefitted the local elementary school. Kind of funny since mechanical bulls really only belong in bars, but we went with it (as did a lot of other festival-goers).  All walks of life rode the bull - a grandpa being cheered on by his grandkids, a bachelorette in a dress (we saw London, we saw France, we all saw her underpants), and Henry.

Henry is pretty much up for anything so he rode the mechanical bull with gusto. The operator took it easy on him until the end when he was promptly bucked off.  The bachelorette in her dress and sash was a much better sport than I would have been in that situation.  I would have told my friends to take a hike, but she begrudgingly rode the bull and flashed the festival.

Other than that, it was a very family-friendly event, and we had a lot of fun.

Day 275 - Accent

We went out to dinner for our anniversary tonight.  A friend gave us a gift card last month to one of our favorite restaurants, the Fat Hen, that we cashed in tonight.  Henry tagged along and wished us happy anniversary at least 3 times while we were at dinner.

The crowd at the Fat Hen did NOT consist of young families.  Henry was the only child that we could spot in the restaurant which always makes me a little uneasy. We were seated between two older couples who did not have 4-year olds with them, and I could tell that the couples were not exactly thrilled that Henry was basically joining them for dinner.  He was on excellent behavior, though, and ended up making friend with the couple to his left.

At one point, Henry and Mike got up to use the facilities, and the woman next to us asked where we are from.  I said that we are from here, and her response was "not originally" in a very heavy New York accent.  I don't have a southern accent so people automatically assume that I am not from the south.  I don't have an accent at all, and nor does Mike.  I told her about our respective backgrounds, and she revealed that she and her husband moved to Charleston from Brooklyn several years ago though her accent gave her away before she told us where she grew up.

I'll admit that I can do pretty good southern and New York accents that I bring out on special occasions, but I don't speak with an accent as a general rule.

Day 274 - Trip

I've booked a few more work trips - a very quick one in December and a more extensive one for January.  I am doing my very very best to return to a more "normal" way of functioning.  (What is normal anyway?)  I feel well, both physically and emotionally and am operating accordingly.

There have been times over the past year when I would have been afraid to try to find some normalcy.  After all, I was living my normal life when my diagnosis hit me out of the blue.  It's hard to explain, but there have been time when I was afraid that someone else would hit out of the blue if I got back to a more "normal" way of life.  Those thoughts still sneak in on occasion, but I am better at identifying them as unfounded and irrational.  That thought process may not make any sense, but I've been there.

Fear creeps in, and fear hits me at the strangest times, but I will not allow fear to rule my life.  It takes regular effort to keep the fear at bay, but the effort is worth it.

I put the word normal in quotation marks in this post because, I will never get back to where I was. I am ok with that because an attempt to do so would be an exercise in futility.  Life has changed.  It happens.  Change happened to me in a very profound and jarring way, and I will never be the same.

Work travel was part of my pre-cancer landscape so it makes sense that it is going to be part of the post-treatment world. 

Day 273 - Dance

You know those people who spontaneously break out in dance?  They can be in the gym, in a store with good music, or anywhere really and just start dancing to the music. There are people in my gym who basically dance through every workout, and the trainers dance their way across the room as they are telling us what to do.  I'm not one of them.  Not even close.  I am a terrible dancer, and I think that part of it stems from self-consciousness (or high self-monitoring as I've mentioned before).  I don't feel terribly comfortable dancing which is probably why I am not very good at it.

I've always admired people who can just start dancing, not caring at all what others think in that moment.  While I'm nowhere near being able to walk through the grocery store dancing, I am loosening the reigns on self-consciousness.  I am more comfortable with myself (and my physical appearance) than I have ever been.  I am who I am, and I am ok with that. That is not me being egotistical, just ok in my own skin.

I went for a run/walk today during lunch and listened to the Pitbull Pandora station during my exercise.  Let me just tell you, it's hard NOT to dance listening to that station.  I held it together (obviously) while I was outside, but I did find myself dancing a little bit in my kitchen while I made my lunch.  The music was so good that I left it on after I was finished with my workout. Mike was not home, and the dancing probably would not have happened had he been home.  The fact that it happened at all, though, is somewhat notable.

I'd like to continue to lighten up a little bit, but you probably won't find me dancing at the gym anytime soon. 

Day 272 - Dinner

When I was growing up, more often than not, dinners were eaten together as a family.  Sometimes they were quick, sometimes they were involved, sometimes they were late, but they were most often together.  I will admit that I have not been good about doing the same for my family.

Sitting down together for dinner is something that I have always wanted to do (and have manged sporadically), but it is not consistent.  It's difficult to move right from work to dinner preparation, and I will admit that I am a bit controlling when it comes to cooking.  I often used the time between work and getting Henry fed to play with Henry or let him play outside with his friends (both of which I consider to be important), and dinner together got pushed aside. I managed to get something healthy on the table for Henry, but the bulk of the cooking and eating for Mike and me was done after he went to bed.

Last week, Mike told me that he'd like to help with dinner preparation so that we could get dinner on the table easier and earlier so that we can eat together!  And it's working.  Last night and tonight, we managed to eat dinner together at the table at 6 or 6:15.  I know that something like this sounds so simple, but it was overwhelming to me.  Now that Mike and I are making dinner together, having a meal as a family is a much more attainable goal.  Surely there will be nights when it just does not work, but taking the time to pause and sit down with each other is awfully nice, and I still managed some quality play time with my Henry before we ate.

How wholesome are we these days?!

Day 271 - Observations

I found that people made a lot of observations (to me) about my physical appearance last week, which I guess people tend to do.  Most of them centered around my hair as I suspected they would.  People weren't necessarily unkind about my hair, but they would walk up to me and just make statements such as "you cut your hair" or "wow, your hair is different."

I feel like a polite person would follow up such statements with "it looks nice" or something like that, but most people didn't.  Maybe they thought that my hair looked nice, and maybe they didn't.  I don't really care, but I did find it strange that someone would just walk up to me and repeat a fact to me about my appearance.  Clearly I know that I have short hair.

One person pushed a little bit and said "what made you decide to make such a drastic change?"  My response "chemo."  Then we had a nice discussion about the past year, but if someone is going to be so unapologetically blunt, then I will do the same.

There were also a few comments about other aspects of my appearance, but the hair comments were the most prevalent. I wasn't necessarily offended by the comments so let's say that I am observing the observations.

Day 270 - Treat

I took Henry trick-or-treating last night, and it was so much fun.  I had a big talk with him before we went about how important it is to say "trick-or-treat" and "thank you" after getting candy (I hate it when kids just silently walk up with their loot bags open), and I could hear him bellowing "HAPPY TRICK-OR-TREAT" at every door.  It was very cute and made me smile all night.  He came home with some good loot and a lot of energy, exactly as it should be.

We had a low key day today - brunch downtown, grocery shopping and general chilling.  Henry was playing with some friends in the yard this afternoon and somehow managed to run smack into our back door so he is currently icing his face as I type this.  He'll be fine but may have a shiner for a few days.  Henry is a lot of wonderful things but "coordinated" is not one of them.

Day 269 - Captain America

I am still not entirely sure how I got convinced to drive down to the beach when I got home last night, but I am glad that I did.  We had a nice evening last night, and I slept until 10:30 (!!!) this morning.  My body thought that it was 7:30, but wow!  It was so nice to get so much sleep. I think that I got almost 12 hours.  I needed that.

The moment that I woke up this morning, Henry wanted to carve pumpkins.  I tossed the pumpkins in the car yesterday when I was packing up overnight bags so they were ready to go.  He wanted to do 2 faces this year instead of getting more creative, and I was ok with that.  Faces are easy enough to do.  His pumpkin had a scary face, and he wanted mine to have a nice face.  Pumpkins got carved, and we met the rest of the crew while they were out crabbing.  Crabbing was slow, but it was a gorgeous day so we enjoyed being out.

I peeled away from crabbing and went for a 30-min walk/run.  There is a Thanksgiving Day 5K here that I did last year, and I want to be able to run the whole thing this year.  I should have enough time to get there, and if I'm not, that is ok too.

Henry was Captain American for Halloween this year. He was under the impression that he had to use a costume that he already had for Halloween so we just went with it.  He has some fun dress-up clothes and wanted to wear his construction costume until yesterday when he decided that Captain America was better.  The last-minute change was easy though to manage.

I love Halloween.  I don't dress up but did snag a festive skeleton t-shirt to wear this year which is more than I usually do.

Day 268 - Landed

I'm home safe and sound after a long but uneventful day of travel. I landed in Charleston at around 6pm, went home, packed a quick bag and drove out to the beach to catch up with Mike, Henry, my mom, Glen and some of our family friends.  I was not planning on heading right out to the beach the moment that I got home, but I am so glad that I did.  I got to squeeze my sweet Henry and catch up with a lot of people tonight.

I am going to call it an early night, though. 3:30am was a tough wakeup call this morning!

Day 267 - Over

The event is over, and it was successful by almost all standards!  There are times when things get panicky and stressful behind the scenes, but as long as that tension is not passed along to our attendees (and it's not), then I am fine.  The hotel where we had the event probably (definitely) had the worst convention services team that I have ever encountered, but the staff that we dealt with the most during the event were really great.

There was one point where our convention services representative walked past us without even stopping to check in and see how were were doing.  He just flicked a brief wave and kept talking to his colleague.  We rarely saw him, and when we did, it was because I texted him with a "I need to talk to you. Please meet me at registration."  Goodness.

Bad service aside, I am glad that I was here for the event.  I'm so glad that I was here for the event.  We're going to go out to dinner tonight to celebrate a successful conference, and I get on a plane bright and early in the morning. 

Day 266 - Balloons

We had a big setup day on Monday and a few small meetings.  I also had the opportunity to sit down with my boss to have some lunch. During lunch, he said "let's grab a drink later."  I spent the rest of the afternoon thinking/hoping that he would cancel drinks so that I could go to bed early.  It turns out that he and I weren't just having drinks.  My colleagues had planned a surprise welcome back party for me, and having a drink with my boss was a guise to get me to the party.

They reserved a section of the hotel's bar and ordered some food and drinks. They also got me a huge bundle of balloons and a very sweet card.  It was so touching. I broke my "no crying at work rule" because I was so blown away by the kind gesture.  I am very fortunate to be surrounded by so many caring and thoughtful people.  What a fun way to kick off the event.

The bulk of the event is over as of today. We've got a small meeting tomorrow and some final wrap up then will go out to dinner tomorrow night before heading back to our various homes.  I've been really glad to be at the event.  Being here has been my work-related goal since treatment started, and I am proud to say that my goal has been accomplished.

I've forgotten how sore my feet get at events though.  OUCH!

Day 265 - Long

I am falling into a moderately uncomfortable hotel bed after a very long day.  It was a great day but a long one. I have much to say but must sleep first!

Day 264 - Ghosts

The hotel where we are having our event is a very historic (old) hotel, and I have no doubt that it is haunted.  I didn't sleep all that great last night at all, but I was afraid to open my eyes every time I woke up. If there were ghosts in my room, I didn't want to see them.  I'm kind of kidding..kind of.

Event set up went well today, but it was a long day. Day 1 kicks off at 8:00 tomorrow morning so we'll be up before the sun to make sure that everything is in place.  We're off to the races. 

Day 263 - Market

We went to an area called the Malibu Country Market today.  It's a shopping center with a playground and restaurants, but calling the area a "shopping center" would be so not Malibu.  The country market is really nice and has very high end shops.  I could have spent a lot of time wandering through the shops,  but we spent most of our time there watching Henry play on the playground.  He's a fool for playgrounds, and I love to watch him play and share his enthusiasm for the simple act of playing.

After we went to the market, we drove to a pumpkin patch in the valley.  It was a nice little pumpkin patch that had two bounce castles with slides so Henry was hooked. He played on the slides, and we pulled him away for a bite of lunch.

I needed to be at my hotel downtown late afternoon, and everyone was up for a ride downtown so they all dropped me off.  It was tough to say goodbye to Mike and Henry.  It's been a while since I have been away from them.  Henry was particularly clingy which was hard, but I have a feeling that he moved on the moment that he got back into the car.

I had dinner with some colleagues tonight (!!) and have some work to finish up tonight before our big setup day tomorrow.  It's really happening.  I am at an event for work.  I wanted to finish treatment in time to be at this event, and it has happened.  I am so grateful. 

Day 262 - Airplane

I got on an airplane today and was surprised by the feelings that happened.  Before today, the last time that I got on an airplane was the day after I was diagnosed.  I actually started this blog on a Jetblue flight late at night on February 6 as I flew home from DC (I wrote the day 1 and day 2 posts at the same time).  As nuts as this may sound, I was borderline nervous to go home that day. I knew that going home meant talking to Mike about my diagnosis in person, and I knew that going home meant that reality as I knew it would change.  Going home, meant that I had to face the music and face my fears. I thought that I was out of tears, but I was wrong because they flowed the moment that I saw Mike that night.  We talked for a long time that night, but I don't remember a word that either of us said. I also remember sitting on the floor of Henry's room for a long time that night.

It was clear that Mike had been waiting up for me, and it was clear that he was just as upset as me.  We hugged for a long time, I cried for a long time, and we both vowed that we'd do whatever it took for me to get better.  That was my stance on day 1, and it has not changed in the past 261 days.

As I move further from treatment, there are going to be experiences that trigger tough emotions related to my diagnosis.  I can generally anticipate when they will arrive, but sometimes they hit at strange times.  I was not expecting the simple act of getting onto an airplane to make me feel somewhat emotional, but it did.  I am grateful that I am well enough to travel.

Being on an airplane today was the start of getting back to a more normal work schedule and to getting back to living even more than we have been.  I hesitate to put this out on the internet (our house is being monitored multiple times per day though), but Mike and Henry were on the airplane with me today!  We are all going to spend the night with a family member in Malibu tonight then Mike and Henry are going to stay there for a few more days while I am downtown for work.  A change of pace and scenery will be really nice for us all, and I hope that we all return refreshed and ready to tackle even more living.

I am not ashamed to admit that I pulled the cancer card on the second leg of our flight today.  I rarely pull it but had really good reason to do so today.  As we were waiting in line to board or second flight, I saw a mother mopping up her 3(ish)-year old with baby wipes.  The child looked so pitiful, and I heard the mother say "please tell me if you need to throw up again."  I felt horrible for the mother, but I did not want to sit near the two of them.  We got on the plane before them, and you'll never guess who sat in the seats directly behind ours.

I snagged a flight attendant, told her that I recently finished cancer treatment and need to try to avoid germs as much as possible.  My immune system seems to be doing well as evidenced by not getting a full blown cold when Henry recently came home with a little cough, but I am not taking any chances.  The flight attendant held a row in the back for us while we scooped up our stuff and moved.  I am pretty physically sturdy despite all that my poor body has been through, but I am not taking any chances, especially with a stomach virus.

We had smooth travels and are safe and sound in Malibu.  We've already dipped our toes into the Pacific.  I'll post some pictures when I have a better cellular connection.

Day 261 - Turbulence

On February 2, Mike, Henry and I flew back from Florida.  I had to be in south Florida for work, and Mike and Henry tagged along so that we could stay for the weekend.  Our flight home took us through Baltimore (flying Southwest = obscure layovers).  As we were descending into BWI, the captain came on the loudspeaker and said something along the lines of "Please remain seated and make sure that your seat belts are very tightly secured.  We are going to experience some significant turbulence."

Let me tell you, when a pilot tells you that you are going to experience "significant turbulence," it is going to feel like the plane is going down.  That 757 felt like it was a paper airplane for about 2 minutes.  We were tossed all over the air.  While I was holding onto the arm rests for dear life and practicing my deep breathing, I could hear Henry next to me saying "weeeee weeee weeeeee" as though he were on a roller coaster.  Once we landed, the people in front of us said that Henry helped get them through those scary 2 minutes.  Henry really does come through in the most unexpected situations.  I was too scared to even cry, and he was delighted by the rocking and rolling of our airplane.

When I tell this story in front of Mike, he always says "Nancy, it was not that bad."  I disagree.  It was that bad. I've been on a lot of airplanes and have never experienced anything like that.  We landed safely at BWI, but I dreaded getting on another plane to come home.  Thankfully, the air was smoother during the second leg of the trip.

In hindsight, that rough air was just the beginning of "significant turbulence" for me (us) as the lump that I had been feeling in my left breast was deemed concerning the very next day.  The air is still a little bit rough around here, but I no longer feel like we are in paper airplane mode.  Our seat belts are still securely fastened, and we're waiting for the captain to turn off the seat belt sign so that we can freely move about the cabin.  It's going to happen soon as the air continues to become more smooth. 

Sorry for the giant metaphor, but I was walking the dog this morning and saw at least 10 contrails in the sky so was reminded of that flight.  The biggest lesson here should be - take the pilot seriously if he warns of "significant turbulence."

Day 260 - Ole

Sometimes therapy comes in the form of a large frozen margarita and Mexican food with a friend.  I think that I've made my love for Mexican food clear so when my friend who I have known since high school suggested that we meet at Senor Tequila for dinner, I immediately accepted. I had 2/3 of the margarita, great food, and even better company.

My friend has the best memory of anyone I've ever met so it is always great to reminisce with her. She remembers everything, and I love it.  We told a lot of stories, shared a lot of laughs, and I am so glad that we got together. 

Day 259 - Notebook

I have started putting together my notebook for next week's event.  I suppose that it really is a binder, but I've already used "binder" in a post title so that was clearly out. I've got very specific requirements for event notebooks - it must be a 3 ring binder with a clear plastic pocket on the front.  I print a copy of the event schedule and put it in the clear folder to reference often during the event.  The folder also houses chap stick, mints, my cell phone, my jump drive, and other event necessities that I carry with me from place to place.  The plastic pocket is usually pretty banged up by the time the event is over, but it does the trick.

I've also been known to use my event notebook to cover up my name badge.  I distinctly remember a salesperson roaming the hallways of an event looking for me a very long time ago, and I was conveniently incognito since my badge was covered by my notebook.  I am sure that this salesperson was perfectly nice, but I was not up for a pitch on why we should use his company for particular services.

My binder also contains menus, floor plans, contracts, hotel guest room information, important phone numbers, etc., but I don't find myself referencing those documents terribly often. I just like knowing that I have them in my possession should I need them.  The binder is a security blanket for me during events, and it has even  been the subject of some good-natured teasing, "Nancy, we never see you without a binder in your hand."  Obviously.  Where else would I store my mints?!

Day 258 - 2015

I look forward to the day when we look back and say "wow, 2015 really sucked."  Until then, we continue to celebrate daily life and continue to wait for some of 2015 to resolve itself!  All is fine, but man, I think about the hand that we've been dealt this year and cringe.

Day 257 - Ritual

On Day 78, I talked about my work travel packing ritual and lamented the fact that I was not packing to travel to an event.  I am happy report that I began my packing ritual for my fall event this morning!  Our guest bed has folded outfits on it, and the floor next to the bed is starting to fill up with shoes.  As I said on Day 78, shoes really are of the utmost importance, and I bring several pairs to rotate with each outfit. Sometimes, I can get away with wearing the same pair at times over the course of several days, but I can't bank on that.

As someone who works from home full time, I spend a lot of time in comfortable shoes - sneakers, flip flops, boots, etc. so squeezing into heels or even some dress flats really makes my feet angry.  I should wear heels/dress shoes more often to keep my feet conditioned, but I don't so I travel with options and band aids.

Work was busy today with preparations for next week's event, but that is entirely expected during the time before a big event.

After work tonight, I GOT MY HAIR CUT! Not many people can say that they've had a second first haircut, but I had the second first haircut of my life. Mike came with me, and we went out to dinner with our friends after to celebrate and catch up. It was a really great night.

Action shot! 

Day 256 - Photos

As we were leaving the house to go have some family photos made this afternoon, Mike looks at me and said something along the lines of "I'm not really sure why we're commemorating this year with all of the bad things that have happened."  I tried (unsuccessfully, in his mind) to refute that comment with examples of good things that have happened or we have done, and he landed on "you being better has been the only good thing so far."

I can see where he is coming from.  This year has had enough challenges for a lifetime.  We've had one income, a cancer diagnosis, a broken arm, and struggles associated with all of the above (to name the biggest things).  2015 has not been my favorite year by a very long shot.  That said, I don't think that my good health news is the only good thing that has happened this year.

Trust me when I say that I've been affected more than anyone by the events of this year (please see half of my blog posts).  When I tried to challenge Mike's statement about the "only good thing" about this year, I really couldn't come up with concrete examples of other good things, but I thought about it for the remainder of the afternoon.

Other good things did happen this year because we kept on living despite the curve balls that were thrown our way.  Birthdays were celebrated, weekends were full of activities or small get aways, friends had babies, we spent time with family and friends, played on the beach, went on boat rides, we laughed a lot, I cried a lot, I snuggled my baby as often as I possibly could, and we kept moving forward with daily life.  I'm pretty damn proud of us for making the very best that we could out of some circumstances that were entirely out of our control.  We kept on living because there was no question that we would do anything differently.

Yeah, a lot of "bad" things have happened this year, but we have made the most of the hand that we were dealt and are looking forward to things continuing to look up. And I cannot WAIT to see the pictures from today!  The photographer that we use is so talented and took a ton of pictures.

Day 255 - Stickers

My grandfather passed away on Wednesday of this week.  He was 91-years old.  When my other grandfather passed away over 7-years ago, I distinctly remember the minister at his funeral saying that death can be a tragedy or death can be a blessing.  Passing on was a blessing for both of my grandfathers though it does not make the loss any less sad.  We celebrated Grandpa's life today, and it was nice to have family together to memorialize him.  His burial was accompanied by military honors which I always find particularly moving, and I could see my grandma tear up when the soldiers handed her the folded flag that had been placed over the casket.  They were married for almost 70 years.  70 years!

In preparation for taking a 4-year old to a funeral, I picked up a few new quite things to keep Henry occupied during the church service.  Walmart sells little packages that contain stickers, a small coloring book and crayons so I snagged two of those, and we brought some of his other toys with us as well.  After the service, the family met visitors in the church parlor.  Henry loves stickers so took the stickers out of both packets and started to hand them out to aunts, uncles and cousins.  Then he took the sheets of stickers and proceeded to walk around the room and give stickers to everyone in the room.  He even made his way over to those waiting to see my grandma to ask each person what sticker he/she would like to have.  Henry totally worked the room as a politician might - talking to everyone, offering stickers, making new friends.  It was thoroughly entertaining.

Children can bring much-needed levity to more somber situations, and I am grateful for that.  I think that he delivered sunshine to almost everyone in the room, and was really worried about those who may not have gotten a sticker once the supply ran out.  Henry hasn't met a stranger, and I am delighted by his social nature.

It is always sad to say goodbye to a family member, but today really was a celebration of my grandfather's 91 years. May we all lead a life as great as his.

Day 254 - Mode

I've been in event mode at work for several weeks now, but today seemed especially busy.  There were a lot of deadlines that had to be met today so that things could get printed, and it seems like they all blew up a little bit right around 4pm today.  I like the pace of event mode though it not sustainable over a long period of time.  There is something exciting about the fast pace.

Today was bananas, and I have a feeling that work will carry over into the weekend. Happens sometimes, and I am ok with it.

Day 253 - Ten

You can probably tell that I am still running at a strong 10.  Anxiety hits me in either short bursts or big waves at random times during the day, and I am working on ways to deal with it as it comes.  Despite that, I am doing pretty well.  I feel well and am happy for the majority of each day.  The rational side of me knows that things are fine, but the emotional side is at odds with the rational side more than I'd like.

That is ok though.  Healing will take a lot of time, and I will continue to try to be kind to myself.  I'd like to take that ten down to a nice solid 5, and I hope that I can do that in time.

Day 252 - Meditate

I saw my therapist today, and we talked about meditation as a way to help me learn to be present and to also help me to relax my mind and body.  I have a big problem keeping my mind present, and the present is all that we really have.  When I think about something that happened in the past, I am using my present to think about the past.  When I think about something that could or could not happen in the future, I am using my present to think about the future.  I feel like I do a good job of being present when I am with Henry, but I have a hard time being present when I am alone with my thoughts.

I've always been a bit of a day dreamer and a what if(er) (in good ways and bad), and that is ok, but being more of a right now(er) will help me a lot right now (see what I did there).  My therapist chuckled at me when I said "I need something that I can schedule to help me get through this transition time and to use as a tool for the future."  So I am going to schedule time to be present to help me with the future through some basic meditation.  I'm pretty sure that there are a lot of conflicting things going on right there, but I am going with it.

I've got some short guided meditation YouTube videos that I am going to try starting tonight.  I feel like my time doing that will serve me better than watching mindless TV or surfing the internet. Bring on the present.

(And kudos to anyone who understood any part of this post)

Day 251 - Mets

Today is National Metastatic Breast Cancer Awareness Day, and social media has been blowing up about it all day.  Some people refer to metastases as "mets," hence today's post title.  As I have said before, metastatic breast cancer occurs when breast cancer spreads to vital organs (brain, lungs, liver, bones, skin), and is the only type of breast cancer that is deadly. No one knows why breast cancer metastasizes so no one knows how to prevent it from happening or really to treat it when it does.  Metastatic breast cancer patients receive chemo after chemo until each type stops working, and they run out of options.  Some live for years and years under these circumstances, but most die within 2-3 years.

This must change.  This MUST change.  Deaths from metastatic breast cancer should be considered a crisis by the medical community and by the government, and there are people working tirelessly to kick and scream so that metastatic breast cancer receives more attention and more funding.

Between 6-10% of breast cancer diagnoses are metastatic from the start, and approximately 30% of early stage breast cancer patients are later re-diagnosed as metastatic.  A metastatic re-diagnosis can happen quickly (within months) or can happen years (as many as 20) later.  Triple negative re-diagnoses generally happen sooner than hormone or Her2 positive breast cancer re-diagnoses, but someone with an initial triple negative diagnosis is unlikely to have a recurrence after the 5-year mark.

This is going to make me sound like a REAL downer (but cancer is a real downer), but early detection does not guarantee that one will not fall within the 30% who are re-diagnosed.  Someone who has an initial diagnosis of stage 0, 1, 2, or 3 (stage 3 is not usually considered to be early stage) can be part of the 30%. Kind of crazy, huh?

Many are likening the metastatic breast cancer crisis to the HIV crisis in the 1980s.  In the 1980s, a diagnosis of HIV was a death sentence.  No medications existed to effectively treat HIV.  Now, however, HIV can be treated as a chronic illness.  Yes, one must take medication for it, but it is no longer a guaranteed killer.

Can stage IV breast cancer be rendered into a chronic/manageable illness? Perhaps, but I think that it will be more difficult.  There are many types of breast cancer, and the medications that work on one type do not work on others, but there has got to be a way to make metastatic breast cancer survivable.  Ideally, it should be prevented entirely, but prevention does not help those who have already received a metastatic diagnosis.  They deserve more time with their loved ones.

I wrote this so that I can do my part to bring awareness to metastatic breast cancer because stage IV/metastatic/terminal breast cancer needs way more attention than it gets. Stave IV needs more!

Day 250 - Nope

The medication that my oncologist gave me to help with anxiety (as well as hot flashes) has made me feel horrible.  I've been pretty barfy for the past 3 days, which the internet tells me is normal when starting this medication, but I am beginning to think that it is not worth it.  I've only taken 3 pills and am not going to take it again. I called my doctor just to make sure that it is ok to stop taking it, and he gave me the green light.  It is generally unwise to stop taking these medications cold turkey which is why I called, but I've only taken 3 pills so I am fine to stop.

I've got something that I can take if I start to feel really anxious and feel comfortable taking that on an "as needed" basis instead of taking a pill that makes me feel badly on a regular basis. It is my goal to feel better, not worse!

Also, I am having a bit of trouble letting go of this blog.  I need to stop writing her as part of my healing, but I am not ready to do so yet so I'll keep writing until the mood to stop strikes.

Day 249 - Lighthouse

This morning, Henry and I met up with some friends to walk on the beach and check out the Morris Island Lighthouse.  We always do our beaching at Kiawah, and I tend to forget about other beaches in town, and I am sorry that I do.  We drove to Folly Beach, stopped where the road ended, and headed out to the beach.  The beach was desolate and gorgeous.  Shells had washed up all over the beach, and Henry and his friends had so much fun running around and picking up shells.

We walked for a while and came upon the Morris Island Lighthouse, a Charleston landmark that I had never seen.  It is a beautiful lighthouse that appears to be sitting in the middle of the ocean. Morris Island is not very big, and I imagine that it gets covered during high tide.  Walking on the beach with friends was a wonderful way to spend a few hours.  I am so glad that we did that this morning.

On the way home, Henry and I both got hungry so we stopped for a late lunch.  Henry said that he wanted fish for lunch so we went to place called Roadside Seafood.  It was nice to have a little lunch date.  We looked through photos on my phone and chatted while we waited for our food. He was as good as gold and such great company.

Day 248 - Gourd

The Annual Touhill Pumpkin Extravaganza happened today, and it was very successful.  We've gotten pumpkins from a local farm for the past 4 years and have always been pleased with their selection and prices. We picked out 6 pumpkins - 3 for carving and 3 for decoration.  I always like the funky-looking heirloom pumpkins because I think they have so much character, but they are not good for carving so we got some nice big round pumpkins for carving.

The farm also has a playground, petting zoo, hayride, and a few other things.  We let Henry play on the playground for a little while and also let him bounce in a bounce house that they had set up.  I'm not a huge germaphobe, but the bounce house was disgusting (which I noticed after Henry got in) so I let him count to 20 then he had to get out.  The rest of the playground area was nice, and we passed on the petting zoo and hayride.

Shortly after we left the pumpkin patch, the sky fell so we left at a good time.  Henry and I went to see a movie this afternoon. Hotel Transylvania 2 was good enough.  Henry claimed that he didn't like it but seemed to enjoy it while we were there.

Very nice Saturday and successful Extravaganza!

Day 247 - Hair

*How is it possible that I am on day 247 and don't have a post entitled "Hair" until today?

I saw my medical oncologist for the first time since July today.  It was very nice to see him, and we spent the majority of the appointment talking about TNBC treatments that are in trials right now.  He actually started the conversation with "what new studies have you been seeing?"  That kind of cracks me up, and it shows that he knows how I operate.  He knows that I am up on research.  Research moves slowly, but it is moving.  We spent a decent amount of time talking about immunotheraphy. Some immunotherapy drugs have been approved for some of the most aggressive cancers - melanoma and small cell lung cancer, to name a few.  I think that the approval of some of these medicines to treat TNBC is just a matter of time.

I also talked to him and his medical assistant about some anxiety that I've been having.  I cannot tell a lie - they offered some medication to help with that, and I accepted.  They actually offered two medications.  I'll take one of the medications regularly for a month or two and see how I feel, and I have another one that I can take if I am feeling particularly anxious at any given time.  The regular medication should also help with hot flashes which is a major bonus.  It is my overall goal to be on fewer medications than more over time, but I am going to unapologetically take some help right now. I need it.

The reason that I titled this post "hair" is because my oncologist said that I have the best hair re-growth that he's ever seen. He's seen a lot of bald people in his 15-years of medicine so I take this as a high compliment.  I felt that it would be unfair to post such a claim without a photo so here's a picture taken in my office right before I shut things down for the week. I've got some serious hair for someone who was bald just a few months ago.

My oncologists' waiting room was packed today. Packed.  I am actually not sure that I have ever seen it so crowded.  I walked over to say hi to the infusion room receptionist  while I was waiting to see the doctor, and there was a sign that said "due to a high number of infusions, please expect delays." None of my 8 infusions ever started on time or even close to on time so I cannot imagine the delays that people experienced today given the sign. It was hard to be in the waiting room.  There was more sadness than hope today. I could feel it.

On the opposite side of the coin, a friend of mine had her last chemo today so I went to say hi to her during her treatment to help her celebrate.  It was fun to see her and to cheer for her last chemo.  Last chemo = really big deal!

Day 246 - Tough

Today was a tough day emotionally.  I am prepared for tough days and have some good coping mechanisms to help work through they, but they are still notably tough.  I am in a strange place of wanting to move forward but not being able to do so yet. 

I also think that October, in general, is going to be a hard month for me as time wears on.  Things that I have seen thus far in October range from absolutely ridiculous posts about saving "boobies" to the names and pictures of women and men who have died from metastatic breast cancer. 

This was posted in my Breast Cancer Survivor Facebook group:

The normal boobs ( . )( . ), the silicone boobs ( + )( + ), the perfect boobs (o)(o). Some boobs are cold (^)(^), and some boobs belong to grandmothers \./\./ And let’s not forget the very large boobs (o Y o), and very small boobs (.)(.), and lastly the asymmetrical boobs (•)(.). We love them all!...
Post this message on your wall and say ┌П┐(◉_◉)┌П┐ to Breast Cancer!!! Save the boobies.

All members of this group are breast cancer survivors (hence the name), and it BLOWS MY MIND that a breast cancer survivor could be so ignorant.  I try not to engage with these types of posts because there is no point, but come on.   

On the stark other hand, a Facebook friend is posting the name of someone that she personally knew who died from breast cancer every day in October.  She started with members of her family. Her posts are hard to see but important to read.  Breast Cancer Awareness Month should not focus on "boobies" or pink everything.  We should be reminded of those who have gone before us, and it should encourage us to want to do more. 

I want to do more. I'm going to do more, but I will still have tough days. 

Day 245 - Hopeful

On day 54, I posted about hope.  It was a very rambling post, as many have been, and I talked about how passive "hope" is.  I still think that hope is passive.  There is no action that can be taken when one is hopeful, but that is where I am right now.  I am hopeful.  I am hopeful for the future, and I am ok with that even though it is passive.  I have taken so much action over the past 8 months, and I feel confident in what I have done.

Outside of any clinical trials that are being developed to help prevent TNBC recurrence, I have done everything (and more) that I could do.  I must have faith that my everything is enough.  A time will come when I can trust my body again and every ache and pain does not elicit sinister thoughts.  I can continue to be patient and hopeful.

Day 244 - Recap

In typical 2015 fashion, we had a little bit of excitement over the weekend and into yesterday.  The state of South Carolina has been experiencing what has been deemed a 1,000 year flood.  A gigantic band of rain sat over the state beginning on Friday and lasted until yesterday.  The middle to lower part of the state were hit the hardest.

On Friday, we went up to Greenville (NW part of the state) to spend the weekend. It rained a lot in Greenville, and we were glued to the news coming from other parts of the state.  On Sunday, we saw that our route home was experiencing significant flooding and road closures so we decided to stay in Greenville for another night to be safe.

So we left Greenville at 7:00 yesterday morning, and took a very long way home so that we could avoid the worst areas entirely. We arrived home at about 1:30pm, giving us time to regroup for a few minutes and head to radiation.

I spent our time in the car yesterday working/responding to emails and reflecting.  I found myself tearing up often during the drive as I thought about all that has gone on in the last 8 months.  Time has simultaneously flown by and stood still, and I still can't believe all that we have been through.

The three of us arrived at radiation a few minutes early, and Henry was SO excited to be there and to help me ring the bell after my treatment.  The receptionists and nurses fawned over me, everyone congratulating me on my last day and everyone commenting about how they are glad that the floods didn't postpone my last day.

I got onto the table for the last time, turned my head to the right to be in the proper position, and the tears just flowed.  Neither of the techs positioning me for treatment could see that I was crying, and one reminded me to just breathe normally as he was getting me ready. It was hard, but I was able to control my breathing, but the tears still fell.  They fell as each part of the field was radiated, and they fell harder after the buzzing completely stopped.  I was finished.  My treatment had come to an end.

I made all of the techs give me a hug, went back to the lounge, got dressed, and headed to the waiting room where Mike and Henry were waiting for me with big smiles on their faces.  They were done with treatment too, and they get to celebrate this milestone as much as I do.  Henry helped me ring the bell while the receptionists, one of our neighbors who works at the cancer center, Mike, and the other people in the waiting room smiled and cheered for me.  It was perfectly simple and wonderful.  I cried more, got more hugs, and we walked out.

Just like that, we walked out.  We walked out into the great big post-treatment world.  We walked out and walked into a happy and healthy future for all of us. Yes, I'll be back for follow up appointments, but I hope and pray (and HOPE and PRAY) that I never hear the buzz of a radiation machine or see the drip of chemo coming into my body ever again.

More on those thoughts and feelings later.

We celebrated with champagne and dinner out at our local Mexican place.  We also got Henry a quick haircut since the place where we take him is right next to the Mexican restaurant (let's be practical and efficient here).

It was a perfect day - perfectly crazy, a bit stressful, joyful, funny, and not at all what I expected.  Welcome to life.

I am thinking about my last blog post but am not sure when I am going to write/post it yet (it will be within a matter of days I think). I'll leave this blog up for as long as the internet gods will let me, but I need to stop posting.  Tucking my blog away will be an important part of my healing and recovery process, but I am not ready to let it go quite yet.  I want to wrap things up as best as I can into what will probably be the longest blog post in the history of man. Until then, I'll keep posting daily.

Day 243 - For Henry

This picture speaks volumes and caputures so many emotions.  My sweet Henry has no idea how powerful he is.  He has gotten me through some of my darkest days in hopes that I will have a bright future as his mom.  I have so many things to say but am still absorbing it all and figuring out what I can say. Today was my last radiation treatment, my last treatment entirely.

243 days later...

I think that I will have a lot more to say in the coming days, but for now, saying that I am thankful is sufficient.

Day 242 - Thwarted

We took a brief detour out of town for the weekend and are not able to get back to our house at this point.  The state is basically under water, and the major routes home are not passable at this point. The amount of rain that we have received is borderline unbelievable.

So our plans to be home late afternoon/early evening have been thwarted.  Such is life such has been 2015.

I had some grand plans to write a post about the eve before my last radiation, but, at this point, I just hope that we are able to get home in time to have my treatment tomorrow. I am sure that we will and all will be fine, but I am mentally preparing for a delay just in case it happens.

Day 241 - Surprise

About a month after I was diagnosed, I learned of someone who was diagnosed with osteosarcoma. She is 20-years old, in college, and was having some pain while running so she went to the doctor. A series of tests later, she found out that she had cancer.  She left school, has received some of the hardest chemo that exists, has had major major surgery and is back in the chemo chair for a series of treatments that will last until December.  One of her chemo treatments requires hospitalization so that her kidney functioning can be monitored so she spends 4-5 days in the hospital at a time.

She lives in a different town, and we had never met until today!  I coordinate with her mom, and my mom and I went to the hospital to surprise her.  It was so awesome to finally meet and to have the chance to talk about what has been going on with her and me.  We are forever united by our shared experiences, and I am lucky to have her in my life.

Cancer sucks, but it is nice to know that I am not experiencing it alone, and neither is my friend.

Day 240 - Order

I like to try to operate in an orderly fashion, both in my personal and professional lives.  I try to keep systems in place and follow those systems as best as I can.  To me, Monday is a day when something new starts, not a day when one finishes something, but this year has been far from orderly.  As a friend said to me today, finishing treatment on a Monday is just another reminder that I am not in complete control.  She is right.  I am not in complete control, and I have learned to deal with that this year more than ever.

Monday does not just mark the end of treatment, though.  Monday marks the start of life after cancer. When I walk out of the cancer center on Monday afternoon, I will be starting fresh and new.  I will slowly start to remove my finger from the pause button and will start to figure out how to move on.  That will be a process.  Treating caner has been my mission since February 5, and that mission will be accomplished on October 5.  Cancer will always be a part of my life.  I have been changed to my very core.  It's time to move cancer from center stage, to figure out how I am going to apply this to something good (working on a few things there), and to establish my new normal.

I'm excited.

Day 239 - Rain

We are not in the direct path of Hurricane Joaquin but are expecting epic rain to hit the entire state that began today.  Downtown roads started to flood due to high tide at around noon today, and the rain will only add to that flooding.  The Charleston area is expecting anywhere between 12-18 inches of rain in the next 3 days. That is a hell of a lot of rain in a short period of time.  Schools are closed (already) tomorrow. It should be an interesting few days.

As I was walking into my radiation appointment this afternoon, I stopped to talk to the receptionist for a few minutes.  A nurse walked out to let me know that the radiation techs were ready for me so I hustled back.  They gave me a jokingly hard time about being a few minutes late (even though I was already there), and I gave them a jokingly hard time back.  I'm pretty sure that I've waited for hours for them if we add up all of the waiting over the past 6.5 weeks.   It was all in good fun though.

I also saw my therapist this morning, and the appointment was helpful as always.  She's going to try to get me in to see her next week too since it is such a big week. My emotions are running really high right now so seeing her next week would be very helpful.

She pointed out something that I had not previous realized.  I've been operating at a 10 (on a scale of 1-10) since February.  Emotionally and physically, I've been running at full speed, and that is not sustainable. Imagine how quickly your car would run out of gas if you were constantly flooring it. My tank (especially the emotional side of it) is getting pretty low.  I need a break from the extremes and need to run at about a 5 for a nice long period of time.  I am not sure when I'll have that opportunity, truth be told,  but I need to seek it out.

Something else also occurred to me today - I need to prepare a little elevator speech to have on hand for my event at the end of the month.  People are going to ask how I am doing, either because they know what has been going on or because I look somewhat different so I need to be prepared with some answers.  I was emailing back and forth with a show attendee today who mentioned that he was sorry that he missed seeing me in Vegas (for a competing show) last month. I told him that I actually was not in Vegas because I've not been able to travel for a portion of the year.  He responded with "oh right.  I think that I heard you were pregnant.  I hope that all is going/did go well."

I responded and told him what was really going on and made some joke about my new hairdo, but it made me realize that I need to have some answers to questions in my back pocket.  I don't want to make people uncomfortable, and I certainly don't want them to feel sorry for me so I'll have to figure out how to best respond to those who ask. 

Day 238 - Haze

I think that radiation-related fatigue has officially set in.  I am operating in a strange haze of exhaustion and inability to sleep.  It's a bit odd, but members of my Facebook group have assured me that they experienced similar feelings during radiation.  I can push through it, but I'm pretty groggy. I've been getting up from my desk at regular intervals, walking, taking vitamins, and have essential oils (such as lemon, orange, tangerine, grapefruit, peppermint) billowing all around me to help with energy.  I have 3 more treatments and am very grateful that fatigue did not hit until the end of my treatments.  Hopefully it does not hang on for too long after I am finished.

Speaking of haze, a pink haze is about to envelop the US for Breast Cancer Awareness Month.  Before I get into that, I'd like to mention that I have several pink/pink ribbon items that I love.  I have pink braided bracelet that I never take off, and a bracelet with a pink ribbon charm on it that I also never take off.  A friend had a beautiful quilt made for me when I was first diagnosed that I use regularly, and I have a bag with a pink ribbon and the word "unstoppable" on it that I use weekly.   I was also given a hat, two t-shirts, a wine glass, and a few other items that are all very meaningful to me and much appreciated.  My mom's elementary school staff (all of them) dressed in pink and took a group photo for me to show their support.  It touched my heart.

I say all of this because I am not against pink, and I am not against meaningful items that symbolize some of my experience.  HOWEVER, the pink haze can be very dangerous.  It puts a pretty face on a really ugly disease.  During the month of October, breast cancer "awareness" items will be everywhere.  You'll find t-shirts, water bottles, hats, shoes, rain boots, laxatives, pens, notebooks, eggs, pink drill bits, pink buckets containing fried chicken, pink cleats on professional athletes, etc.  You get the point.  Some of these items raise money for great charities, and some raise money for some not-so-great charities.

Eggs for the cure??

Poo for the cure??

Please be mindful of all of these items that claim to raise money for the cure.  The cure will only come from research, and the Susan G. Komen foundation dedicates a mere 7% of its (significant) funding to metastatic breast cancer research.  Metastatic breast cancer is the only kind of breast cancer that kills. The cure will only come when science figures out how to prevent metastasis and how to effectively treat when/if someone does become metastatic.

Beware the pink haze.

Day 237 - Oh Boy

I've been seeing my radiation oncologist every Tuesday for a quick check in during my treatment.  She does a quick scan of my skin, asks how I am feeling, and tells me that she wants to try Orangetheory Fitness sometime (she likes to work out and knows that I am a member there).  Every appointment pretty much follows that pattern.  Today, she walked in and said "this is the last appointment that you will have with me during treatment."  I burst into tears.  Two hugs and a couple of jokes later, I was fine.  She said that I could come and sit in the waiting room whenever I want.  No thank you.  I wish that I never had to enter that waiting room in the first place, but now I am a little scared to let go of it.

Mind you, I already have follow up appointments with both my medical and radiation oncologists on my calendar so I'll still have plenty of waiting rooms in my future, but it is so surreal that I am almost finished with treatment.  I've said it once, and I will say it again (and probably a few more times) - I am so grateful that my treatment has an end.  Some receive some form of treatment forever (and forever is usually not very long for those people).  So while I am unsure of my new world, I am so very thankful for it.

A friend emailed me a few days ago about similar feelings and said that everything has been so controlled during her treatment that she feels like things will be out of control after it is over.  I think that she is onto something there.  The diagnosis comes, a treatment plan is formed, and the treatment plan is followed (for quite a while).  Things are prescribed and controlled as much as possible.

But I managed some semblance of control in my life before cancer and will figure out the best way to do that after as well.

I hope that my expressing such concerns does not come across as whiny because I really am thrilled about being given the opportunity to re-build and move on as best as I can.  I have learned so much this year, and the most important thing that I have learned is that life is a gift, and it should be treated that way. It should be treasured, and I do treasure my life. I am so incredibly fortunate, and there is not a day that goes by that I don't recognize that.

The feelings are crazy. This whole year has been crazy.

Day 236 - Nerd

I can admit, without shame, that I am a bit of a space nerd.  For as long as I can remember, I have loved watching shuttle launches, and I always get excited about any kind of major space event or finding.  Last night's lunar eclipse was no exception.  I wrote the timing of the eclipse down earlier in the week so that I did not forget and kept my fingers crossed for no cloud cover.  It was cloudy for most of the day and well into the evening so I was not optimistic.

I went out at around 9:30pm to assess the situation, and I was delighted that I could see the moon. The eclipse had started, and I saw the moon slowly start to fade away each time I went outside to check.  The clouds picked back up right as the full eclipse started to take place so I was only able to see the full eclipse/blood moon in small shadowy pieces, but I was so happy to see some of it.  There is something so mesmerizing about these types of things, and I'll look forward to seeing such an event again in 18 years.

Also - evidence of liquid water on Mars! How exciting.

I had my last full-field radiation treatment today.  They treatment room was running about 1.5 hours behind which made me even more excited to be near the finish line of these treatments.  I ended up leaving to run a quick errand and switch cars with Mike during the delay, and I still sat in the lounge area for quite a while.

The area under my left arm started to get pretty angry sometime yesterday.  It's very red and a bit raw so I am happy that I will not have any more treatment to that area. The radiation field will be much smaller for my last 5 zaps.

Day 235 - Profound

I've got a lot of deep thoughts swirling around my head.  I might even call them profound.  Most of them relate to how I view myself and how I strive to treat myself in my upcoming post-treatment world. I've always been pretty hard on myself and have applied a lot of undue pressure.  I've learned so much about me in the past 8 months that I can apply to all areas of my life, and I am excited to be able to do so.

One area that needs a lot focus is letting go of guilt as it relates to Henry. I have put so much pressure on myself to "cherish every moment" that I feel so guilty when I do not enjoy particular moments or when I get frustrated with him. There is just no way to enjoy a time when your 4-year old is losing his shit in the Trader Joe's parking lot because you only let him get one mini pumpkin instead of two.  Any parent who tells you that those moments don't stress her out is lying.  So I'm saying it.  It is impossible to cherish every moment though I do cherish most of them.  I need to stop letting minor(ish) frustrations make me feel guilty.

I took Henry to a birthday party this afternoon, and I loved seeing all of the other kids run up to him when we arrived.  He's got a lot of friends in his class and is very social.  He tells me about it, but I rarely get to see it in action so it was fun to see them all interact during the party.  Those were moments to cherish.

Day 234 - Week

It's hard to believe that my last full week of treatment is on the horizon. As I type this, I am looking at my dwindling paper chain that only has 6 more links.  So many feelings are cropping up as I wind down treatment, but I realize that they are just amplified feelings that I have had the entire time.  I find myself a bit tense and a bit anxious and try to remember why I am that way right now.  Being kind to myself and cutting myself some slack are important right now.

Speaking of tense, I took Henry clothes shopping today.  We realized that Henry hardly had any long-sleeved shirts or long pants that fit him so he needed a wardrobe update.  Henry is right on the edge between toddler and kid clothes so I was not sure what to buy for him.  He had to come with me and try on some clothes.  I'd prefer to not do that again anytime soon.  He was not badly behaved but did act like a 4-year old, and 4-year olds are not well-equipped to either look for or try on clothes.  He's officially in kid sizes which is very hard to believe.  When did he get so big?

After our shopping, we went to Starbucks for a treat.  I had a coffee, and he had a cake pop and juice box.  Starbucks' pink cake pops are incredibly good. I am sure that the other flavors are good too, but I've never ventured past the pink ones because they rock.

Day 233 - Tornado

I have not slept through the night in months.  My night have been full of tossing, turning, staring at the clock, etc, last night being the exception.  I woke up this morning to my clock flashing due to a power outage and an alert on my phone from 12:45am that read "Tornado warning in your area until 1:30am.  Take shelter now."  Tornadoes touched down approximately 1 mile away from our house, and funnel clouds were spotted even closer.  Really scary.

Thankfully, we are totally fine though I am not really sure why my phone's alert system did not wake me up.  I turn my phone to silent overnight, but have it set so that my phone will ring if anyone on my "favorites" list calls even when the phone is on silent.  I just assumed that emergency warnings would usurp the silent setting.  Either the alert sounded, and I slept through it, or it did not go off at all.  We definitely should have been huddled in our first floor bathroom.

While there was some damage to homes on Johns Island (very near us), no one was hurt which is great news.  Apparently, it was a very exciting night.  I was sound asleep.