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.

Day 232 - Rave

Last night, at around 10pm, Mike and I heard Henry walking around upstairs.  Mike hustled upstairs to find out why Henry was awake and immediately summoned me up to assess the situation.  Henry had snuck into my office, pulled out approximately 75 glow sticks (I had ordered a pack of 100 from Amazon), cracked them all, and had them in his bed with him.  His bed was all aglow. You might imagine that such an infraction was not well-received by his parents.  The glow sticks went into the trash, and a tearful Henry finally went to bed.  He was having his own personal rave in his bed at 10pm on a Wednesday night. 

Bedtime tonight was accompanied by stern warnings and a description of consequences (no sleeping in his tent over the weekend) for sneaking out of his room for anything other than a trip to the bathroom.  Hopefully we made our point.

Entirely unrelated, I spoke with two of my doctors on the phone today.  My radiation oncologist called me to discuss the boosts that I will get at the end of my treatment.  She started the call with "I didn't want to leave this in a voicemail, but I was looking at your CT scan..."  After my heart started to beat again, she said that she had been thinking about me and wanted to let me know that the surgical cavity had gotten smaller so the boost area would be smaller than anticipated.  She also reinforced the importance of the boots because I recently asked her if I needed them.  I both need and want them so we are on the same page.  She called while on vacation so clearly she takes her work home with her.  The start of her call totally freaked me out (kind of bad delivery), but she was really just calling because she cares.

My surgeon also called me this afternoon.  Earlier in the week, I dropped a copy of the WSJ article in the mail to him because I figured he'd appreciate it.  He did.  He said that he was glad to read the article and appreciated my portion of it.  He also told me that I am one of the most proactive/involved patients that he has ever had.  He said that he appreciated how well-versed I became in my care and in best practices for TNBC treatment.  Those words really meant a lot to me because I certainly took a very active role in my treatment, and I never knew if it was an annoying or admirable quality in the eyes of my doctors.  Clearly, it was the latter. Very meaningful words from a man that I have trusted with my life and respect a great deal.

Day 231 - Lunch

Today was a big day in Cancerland.  One friend had her first chemo treatment today, and I had lunch with a friend who is nearing the end of her chemo infusions.  I vividly remember the emotions surrounding both the beginning and end of chemo and can empathize with both experiences.

Lunch with my friend was wonderful.  We never leave the table without each tearing up one time or another, but our diagnoses are still so fresh and raw that discussing them dredges up so many feelings.

It is so nice to have this time to talk to each other and to get anything out that others may not be able to entirely understand.  I really enjoy our lunches and am so grateful that we stumbled (almost literally) upon each other.

I went to the gym tonight, and it felt so good.  Today was the first time in months that I have worn my heart rate monitor, and I am glad that I did.  I burned a ton of calories, which is great, but I was mainly curious to see what my heart rate was going to do during my "trying to get back into shape" period.  It was pretty high during most of the class as I expected.  I'm getting there, though.

Day 230 - Single Digits

I only have 9 more radiation treatments to go.  4 full-field treatments and 5 boosts!  It is very hard to believe that I am in the single digits now.  Radiation has sped by (as people said that it would) for the most part though there have been some days when it felt like radiation would never end.

As I've stated, and will likely continue to do so, I have mixed emotions about treatment ending.  I am both excited and scared out of my mind, and I am going to have to choose to focus on being excited as much as I can.

In the spirit of finding purpose behind all of this, I've applied to be a volunteer with two different organizations - METAvivor and Young Survival Coalition.  Both are organizations that do a lot of good, and I would be happy to lend my time and talents as much as I can.  METAvivor is just looking for general volunteers so I've sent them a note about what skills I can offer and am waiting to hear back.

YSC has a program that they are implementing called RISE, and I REALLY want to participate.  Really badly.  https://www.youngsurvival.org/ignite/rise I emailed them to ask them to consider my application even though my diagnosis falls outside of the time parameters outlined in the program requirements, and they said that they would.  I wrote a compelling personal statement, submitted everything, and now I wait.  I feel very passionately about the importance of science and research and would like for my voice to be heard as it relates to that.  Science and research are the only way that the ever-elusive cure will be found.

Day 229 - Journal

The Wall Street Journal article was posted online today! 

http://www.wsj.com/articles/men-and-women-face-cancer-differently-1442854136

It should run in the print version tomorrow.   The article is pretty interesting and certainly worth a read regardless of my representation in it (which is an accurate portrayal of my discussions with the writer).  Anything related to cancer treatment decisions will create some controversy (see the comments), but this article is about a thought-provoking study that was conducted.

Photo credit to Mike. Enjoy!

Day 228 - Tri

Anyone who is Facebook friends with me saw that our friend Dan competed in a triathlon today out at Kiawah Island (and I also mentioned it here yesterday).  It was really awesome to see bits and pieces of the race.  We were able to see him finish the swim portion (within the top swimmers to come out of the water), we saw him during the run for a quick second, and saw him cross the finish line.  Dan placed 2nd in his age group, and he had the 8th fastest swim overall.

There were participants in all age brackets and physical abilities.  Dan finished the race in about 2 hours and 20 minutes, and I saw a woman crossing the finish line at 3 hours and 44 minutes.  I almost teared up seeing her cross the finish line because it was obvious that she had put so much work into the race and was very proud of her accomplishment.  She smiled the entire time she was nearing the finish line.

All of the participants tested their physical and mental strength out on that course, both the person who finished first and the person who finished last, and I am so glad that we got to see it.  Seeing something like this really does demonstrate that physical feats like a a triathlon can be a reality for a lot of people.  I always envisioned triathlons for ultra elite athletes, but today showed me otherwise.  Don't get me wrong, there were some crazy fit people doing this race, our friend included.  The first woman across the finish line was solid muscle, but there really were all shapes and sizes out there.

It was a very inspirational day!

On another note, a while ago, I mentioned that I talked to a reporter at the Wall Street Journal about the influence of social media on cancer patients' treatment decisions.  It is my understanding that the reporter interviewed men with prostate cancer and woman with breast cancer to see how men/women utilize social media to make decisions.  Apparently, I am very male-like in my decision-making process.  Yes, I consulted my social network regarding my surgery (mastectomy vs. lumpectomy), but I also talked to 3 doctors and read a ton of research on the subject before making my final decision. I ended up going with the recommendations of my doctors (lumpectomy/breast conservation surgery) instead of a bilateral mastectomy.  Anyway, the article will go into greater detail, and they may even be running a picture of me.  It should be in Tuesday's Personal Journal section (unless a more pressing story needs to run) so keep an eye out if you subscribe.  I'll also post the link to the online story once I find it.

Day 227 - Quick

Another quick post today. Our friend is in town to participate in the Kiawah triathlon so we went out to Kiawah today to pickup his packet and help scout out the course.  We hit the beach late afternoon for some sandcastles and digging holes in the sand. It was a perfect day for the beach.

We'll cheer on the triathletes tomorrow!

Day 226 - Weekend

This week flew by and crawled by all at the same time.  My October event is drawing near which means that things are hectic at work.  Being away from my desk for an hour each day is starting to take its toll, but I am almost finished with that. I will say that I have gotten into a good routine with radiation, and they were on time every day this week. Bonus!

We are going to spend some time at the beach this weekend, which will be a lot of fun.  It is still pretty warm here during the day, but the humidity is totally gone so it is just about perfect outside.

Day 225 - Confirmed

I spoke with my therapist this morning about my radiation-related sadness, and she confirmed that it it is completely normal and likely a manifestation of fatigue.  We also talked about how some situational sadness over all that I've been through is also to be expected.  I am letting myself feel my feelings, and if sadness is one of them, then that is fine.

I always walk out of those appointments feeling lighter, and today was no different. My doctor totally gets me, and our conversations just flow.  You'll see this theme a lot in the upcoming weeks - I am thrilled to be nearing the end of radiation, but I am also scared out of my mind to be nearing the end of radiation.

The complexity of those conflicting emotions is difficult to describe, but I am going to try over the coming weeks as I draw nearer to the end of radiation.  I hate radiation.  Hate it.  Because of that, I am glad that it is coming to an end.

On the other hand, once radiation ends, the safety net will be totally gone.  I will no longer be in active treatment and will be given a hearty "good luck" by all of my medical professionals.  Yes, I will continue to see them on a regular basis (thank goodness), and those visits will entail a discussion of any symptoms and a look/feel of the area where my tumor was.  They will keep a careful eye on me, and that is somewhat comforting, but there is no additional medical treatment available to me. I assume that I will also have regular mammograms, ultrasounds and maybe an MRI, but I am not sure of the frequency.

It's time to start thinking about how I can move forward in a post-treatment world, and I am still trying to figure out what that looks like.

Day 224 - Radiation Update

As one of my radiation technicians was replacing the stickers on my chest, she said "wow, your skin looks great."  She proceeded to say that they've been known to remove skin when removing stickers at this point in the radiation process.  Shudder.  Thankfully my skin is not coming off, and apparently is not burning too badly in the grand scheme of things.

I have 14 more treatments total.  9 of those will be radiation to the full field (same radiation that I have been getting since the beginning), and 5 will concentrate only on the surgical cavity.  The surgical cavity treatments are called boosts and are intended to provide some extra love right to the area where my tumor once was.

My radiation team started the planning for the boosts today.  I had a CT scan and a second set of stickers placed near my current ones.  I can tell that I am becoming more relaxed as these treatments wear on because I fell asleep for a few minutes during the CT scan.  I was covered in heated blankets and surrounded by whirring white noise so why the heck not.

While I have not had any complications or setbacks, radiation continues to take a bit of an emotional toll.  I am often just plain sad when leaving radiation which seems very strange to me but not entirely unexpected.  My therapist warned me that fatigue can mask itself as depression at times so to be aware of that and not too alarmed if it seems as though I am experiencing some depression.  I think that is exactly what is happening - fatigue is showing up in a different way. I'm not alarmed, and I don't try to block any emotions that pop up.

I see my therapist tomorrow and plan to run that past her during our appointment.  I do not have any traditional fatigue at this point, and I really hope that the trend continues.  I have been bracing myself for massive exhaustion, and it just has not happened.  Of course, it still could, but I am glad that it has not so far.

Day 223 - Lucky

On my way home from radiation this afternoon, I returned a call to a work vendor that I missed while I getting treatment.  The start of the conversation went a little something like this:

Me: Sorry that I missed your call. I was at the doctor.
Vendor: You're lucky. I wish that I was at the doctor.  I have a horrible cold.
Me (not wanting to engage):  Wow.  That sounds pretty bad.

I had bigger fish to fry with this vendor as he totally screwed up something that he was working on for our October event so I think that he was a little nervous talking to me, but WHO SAYS THAT?

Why would someone's first reaction when hearing of another's doctor's appointment be "you're lucky."  He had no idea why I was at the doctor, and it is none of his business, but it was the strangest reaction ever.  I was very tempted to lash out with a smart-mouthed response, but it would have just lead to an awkward conversation with someone I probably will not talk to much again anyway (see screwed up something).

Today's lesson: think before you speak.

(that should probably be the lesson every day)

Day 222 - Crisp

It was so cool and crisp outside this morning, and that makes me happy.  It warmed up considerably during the day, but this morning let us know that fall is around the corner.  I love fall.  There is something so delightful about cool mornings/evenings and warm(ish) days.  The humidity is finally starting to dissipate, and it is so nice to be outside.

I walked our dog this morning before work and felt invigorated inserted of sweaty when I got back. So nice.

It is almost time for the annual Touhill Family Pumpkin Extravaganza in preparation for Halloween.  The Extravaganza has taken many forms over the years - grocery store pumpkins, pumpkins from farmers markets, and pumpkins from farms.  Regardless of the source, I enjoy choosing the perfect pumpkins for carving and for adorning our front steps.

As soon as Henry was old enough to appreciate a good Extravaganza (yes, that should be capitalized), we started sourcing our pumpkins from a local farm.  The farm has a pumpkin patch from which we choose our carving pumpkins and some pre-picked heirloom pumpkins that I use for decorations.  We usually come home with at least 5-6 for a variety of different uses.

I embrace pumpkin carving and spend a lot of time planning out what to do with pumpkins. One year, I drilled holes into a pumpkin so that it looked like it had polka dots.  That was pretty cool, but took way more effort that I had originally anticipated.  Last year, I carved 3 pumpkins - a race car, smiley face, and bat.  The year before, I did a digger truck and dump truck. The digger truck is probably some of my finest carving work.

Mike is a reluctant participant in the Touhill Family Pumpkin Extravaganza as he does not quite share the enthusiasm for Halloween that Henry and I have, but he always ends up having fun.

Day 221 - Sunday Funday

The definition of "Sunday Funday" has changed over the years.  At one point, it meant spending all day with a group of friends watching football and having drinks. We would stretch the weekend until the last possible minute then would usually feel it on Monday morning.  Those were fun times, but I like the current Sunday Funday much better.

Reagan and I had brunch this morning (alone!) and got to spend some time catching up.  It was wonderful to do so, as always. The staff at the restaurant were so attentive to us that it was almost comical.  I think that I was offered more coffee at least 6 times.  We just started to laugh there at the end. 

Once I got home, I offered Henry his choice of going to the beach or the pool, and he chose pool.  Fine with me though I would have been up for a drive to the beach.  He and I had our neighborhood pool to ourselves, and we had a blast.  Henry likes to play with diving sticks, but he can't dive down to get them himself.  He tries but always ends up floating up to the top so I have to push him under so that he can get the diving sticks.  It feel so unnatural to shove my child under water, but he loves it.  

The birthday party was a lot of fun last night.  I had a few glasses of champagne early and switched to water.  Mike offered to be the DD, but I declined because I am such a lightweight right now and did not want to feel badly this morning.  It was the right decision.  We saw a lot of people that we knew at the party and were able to catch up with all of them.  So fun.  

Two of the people who were at the party, a married couple, are pathologists.  I spoke with one of them early in my diagnosis because I wanted his thoughts on doctors in town, and it turns out that he had been in a couple of meetings (called tumor board) during the chemo portion of my treatment in which my care came up.  I found that to be pretty cool and was glad that he had some influence over my care (and my fervent requests for more chemo) because he is brilliant, and I trust him very much.  

Day 220 - Glow

I recently read an article on the internet about indoor activities to do with kids on rainy days.  This afternoon was rainy, and I had a bunch of stuff to do around the house so out came one of the activities - glow sticks in the bath.  Henry and I bought some glow sticks at the store earlier today, and we cracked them open, put them in the bath and turned off the lights.  He loves glow sticks so I figured this activity would be a hit, and I was right. He had a good time, and I got to do a few things in the general vicinity of the bathroom while he played.

I am posting pretty early today because Mike and I are going out tonight!  This is the first time in ages that we have been out without Henry (not that we don't love having him with us), and I am excited about it.  We are going to a friend's house for his birthday party so it will be low key, and we won't have to bring any crayons, puzzles, toy cars, or movies with us.

More on the party tomorrow I am sure.

Day 219 - Remember

As is the case with most Americans, I will always remember the events of this day in 2001.  I was 20-years old and a junior in college, and the day is etched into my soul.  Earlier today, I thought about recounting my version of the day's events, but I decided against it.  We all have our stories as it relates to September 11, 2001, and some are downright harrowing (mine is not).

This article was floating around social media today, and it offers an interesting perspective from the viewpoint of someone who lost a loved one on that day.   I am still absorbing it after reading it twice but think that it is a worthwhile read.   

http://www.buzzfeed.com/stevekandell/the-worst-day-of-my-life-is-now-new-yorks-hottest-tourist-at?bffbmainrepromo&utm_term=4ldqpgp#.bnmDNEPgMA  

Things continue to go ok with radiation. My skin is pretty red and angry, but it is not terribly painful at this point.  I am over the halfway mark with 16 treatments remaining.  

Day 218 - Primary

I have not had a primary care physician in years.  I rarely got sick so if I ever needed any kind of perscription, I would go to urgent care.  That worked well for a while, but I figured it was time to seek out a new primary care doctor.  I was seeing a holistic medicine doctor at the beginning of the year, but I decided not to see him again after he was a bit of an ass when I got my cancer diagnosis.

I find myself getting unintentionally combative in doctor's offices, but I think that it is justified sometimes.  I called the doctor's office this morning to ask if they had my information in their computer system since most of my physicians are in the same system.  They checked and said yes but did ask me to bring in the medical authorization form from their website.  Done.  Printed it, filled it out, and took it into the office with me.  When I checked in, the receptionist proceeded to tell me that I would need to fill out new patient paperwork and was not pleased when I said "I'm not doing that."  I explained why and told her about the discussion that I had with the person on the phone earlier.  She went to check with someone and sent me on my way but was not happy about it.

I hate to act like that (really, I do), but I spend SO much time in doctor's offices so I kind of know the drill.  I prefer to fill out paperwork in advance vs. while sitting in the office, and I also know that all of my records are already in their system...part of the reason why I see doctors in the same hospital system.

Anyway, I really like my new doctor.  He spent a lot of time talking to me about my diagnosis and knew enough about TNBC to be able to discuss it with me. I appreciated that very much.  He looked in my ears (that are STILL giving me problems), and suggested that I try Flonase for a month to try to get the fluid out of my left ear.  If that does not work, he may refer me to an ENT to take a look.

I have established care with a PCP, and I got to keep all of my clothes on for this appointment. Win/win. 

Day 217 - Pout

I'll admit that today was not my favorite.  I was a little pouty (so attractive) all day and was a little sad.  It seems as though the bad news is outweighing the good news these days as it relates to others that I know, and that makes my heart hurt.  Several members of my TNBC Facebook group have been re-diagnosed at stage IV, and that news is such a tough pill to swallow.  It has been weighing on me heavily.

Compound that with being OVER daily radiation appointments and some other stressors in life, and I just kind of lost it this afternoon.  Things are tense, I am tense, and it just all spilled over today.  I am also not sleeping very well which certainly does not help matters.

Of course, I am and will be totally fine, but we're all allowed not so great days, and today was one for me.  I hesitated to post this because I don't want anyone to think that I am sitting here wallowing in a puddle of sad because I am not, but I've always been honest on this blog, and that is something that I intend to continue.

I allowed myself to have a bad day. Now, onward!

Day 216 - Glamour

Please make plans to pick up the October edition of Glamour Magazine (even if you aren't in the Glamour demographic).  The magazine contains a piece called What Breast Cancer Really Looks Like, and it focuses on 5 different women and their individual stories.  The photographer for the piece is a friend, and the article focuses on all sides of breast cancer, which is important.  I feel like most of October's breast cancer awareness endeavors focus on those who have been "cured" and leave out stage IV/terminal breast cancer.  This article does not leave out the group that needs research and funding the most.  I am happy that Glamour decided to show its readers the full picture and applaud the author who wrote it.

You'll probably read more about my thoughts on stage IV breast cancer between now and October when the world turns pink and everyone encourages breast cancer awareness.  Awareness is simply not enough.  Fair warning that I have much to say about this but will save it for another time.

Day 215 - At Least

I recently read something that I found to be interesting and relevant (though not necessarily timely) - don't use the phrase "at least" when trying to be empathetic.  At least you didn't total your car.  At least you didn't break your arm too badly.  At least your cancer is only stage 2.  You get the point.  Using "at least" minimizes someone's problem immediately, and while things could always be worse, the person talking to you about his or her problems is likely pretty upset.

I have absolutely no doubt that I have used "at least" when talking to someone about problems, and I vow to never do so again.  A friend of mine runs a class on dealing with grief, and she recently said to me "it does not matter what the people in my class have experienced as they are all suffering at 100%."  Your 100% is likely different than mine, but it still feels like 100% to me.  That really resonated with me, and I think that it is something that will really shape my interactions with others in my life.  It does not matter if someone else's 100% would be 50% to me as I am not the one experiencing the hypothetical problem.

Nothing has happened recently to prompt this blog post, but I appreciated learning the above and thought that others may as well.

This weekend was really wonderful, and I am so glad that we were able to get out of town to see my brother and have a lot of fun.

Day 214 - Reminder

We are still in North Carolina and were out on the lake this afternoon.  The lake was really rough due to wind and all of the other boats that were out so it was a bit of a rough ride.  As we were bouncing through the water, the sun hit the spray on the right side of the boat and formed a rainbow several times.  It was a nice and fitting reminder of the rainbow that I saw on February 3.  I need those reminders some days, and today happened to be one of those days.

Mike and Franklin played golf this morning so Henry and I were left to our own devices to do something fun. Things open really late around so we took it easy for a while then went to Ikea.  I can think of nothing more fun than inexpensive Swedish furniture, $1 ice cream cones, and more accessories than any house could need.  As anticipated, Henry genuinely had a good time, and I did too.

Today was lovely.  The afternoon on the lake was followed by an early dinner to which we arrived via boat and a sunset ride back to Franklin's boat slip.  It was really perfect.

Day 213 - Lake

We got out of dodge for the weekend for a much-needed change of pace and visit with one of my brothers.  He lives near Lake Norman in Charlotte and has a really great boat that we were on for most of the day.  The last time we were here, Henry's arm was still in a cast so he was not able to get in the water.  He made up for that tenfold today. 

Henry is fearless when it comes to the water, and I attribute that to him starting swimming lessons when he was 10-months old. Mike thought that I was nuts when I suggested that we do that, but Henry's proficiency in the water made him a believer.  

Henry has so much fun swimming, and I like going with him. The lake felt great, and we all went for a dip at one time or another.  Mike also caught a fish which generated a lot of excitement.  

It was a very fun day, and I look forward to an encore tomorrow. 

Day 212 - Cancelled

As I was walking into my radiation appointment this afternoon, I noticed some very black clouds and strikes of lightning in the distance.  Not thinking much of it (it is summer in the south after all), I walked in, checked in, and got ready for treatment.

As soon as I sat down in the women's lounge to wait for the techs to come and get me for treatment, I could hear a storm raging outside.  Two seconds later, the room went totally black, and I heard all kinds of alarms and beeping.  Thankfully the generator kicked in, and a few lights came on so that I could see.

The storm knocked out the power in the cancer center.  I walked out of the lounge, wearing my lovely gown, to investigate the situation.  People were rushing around, and I soon realized that they were getting someone out of the radiation machine.  A gentleman was receiving his treatment when the power went off!  I am pretty sure that someone would have needed to restart my heart had that happened to me, but the other patient was fine.  Apparently backup power comes on in the radiation room, but the techs had to hand crank the table down and away from the machine so that they could get the patient out of it and back into his wheelchair.  Poor guy.

The power went in and out a few more times before the office manager cancelled treatments for the rest of the day.  Getting all of the systems back online would have taken quite a while so radiation was cancelled.  I was given the option of making up my treatment early on Monday morning or just tacking on an additional treatment at the end.  I chose to add an additional treatment on at the end. I will finish radiation on a Monday instead of a Friday (barring further delays of course), which makes me twitch a little bit, but I will deal.  It just feels strange for something to end on a Monday.

As I was walking in, a woman was walking out after completing her last treatment.  I am very glad that the power held for her.  I can't imagine the disappointment of something like that happening on someone's last day of radiation.

I've got a 4 day radiation break, and my skin is going to be really happy about that.  It is pretty red and pretty tender, but it will heal some during the break.  Much excitement in the radiation oncology department today.

Day 211 - Different

Obviously, radiation and chemotherapy are different types of treatment, but I was not prepared for the emotional differences between the two experiences.  I cannot believe that I am saying this, but chemo is a better experience emotionally than radiation.  Hear me out.

During chemo, the patient is either in a communal area or in a room in which nurses are regularly coming in and out.  The patient is fully clothed, able to move freely within the tethers of the IV system, able to look around, can bring someone else to keep him/her company, and has the choice of whether or not he/she wants to interact with others.  While I received chemo, I had some great conversations (and some not so great ones) with fellow patients, my nurses, family, friends, and even with some colleagues. 

Radiation, on the other hand, is a very solitary experience.  The patient is often partially clothed, unable to move, has to look in a certain direction, and cannot be accompanied by anyone else.  Treatments are very fast and are carefully scheduled so it is important to move people in and out when possible.  Sure, the techs are friendly, and there is an opportunity to see other patients and say a quick hello, but the sense of community does not exist in the radiation oncology office as it does in the medical oncology office. 

Trust me when I tell you, I DO NOT MISS CHEMO, but this new atmosphere has been a little jarring with its differences. I've made a few connections during my radiation treatments and have had the opportunity to talk to some really great people, but the atmosphere is entirely different. 

I've never been one to seek out the company of large groups of people. I tend to do better in small groups or in one-on-one situations, and that has not changed.  I still don't feel particularly comfortable in large groups, but I find myself needing company now more than I once did. I used to be fine keeping to myself in unfamiliar or temporary situations, but I crave interaction right now.  I'm "that person" who tries to make friends wherever she goes right now (which is not necessarily a bad thing, just different for me). Perhaps that will change as I get further from my diagnosis and treatment, but perhaps not.  Has cancer made me more friendly?! 

Radiation is very fast, thankfully, but the cumulative time spent in that office will likely be comparable to that of the time spent in chemo. I'll take a less fulfilling emotional experience over chemo side effects any day of the week, but the differences are notable.

Day 210 - Purpose

I was talking to my therapist yesterday about purpose, and I told her that I feel very compelled to find purpose in what I have experienced over the last 8 months.  While I will never fully understand why I have been through this, I am determined to find a purpose behind it.  I have no idea what that will look like, but I must find some good in this, and I think that I will find the good by helping others face similar experiences.

My therapist encouraged me to listen to that voice and to work to find out what that purpose looks like for me.  She said that those who do the best after experiencing something like I have are the ones who are able to turn it toward the greater good.

She brought up an interesting point during our conversation that I had not thought about.  She said that people, especially women, who are diagnosed with cancers besides breast cancer tend to feel a little bit more isolated than those who have faced breast cancer.  It makes total sense.  Breast cancer is rampant and, therefore, has a strong support system.  You can find myriad support groups, both online and in person, non-profits dedicated to helping, books and other literature, and can easily find others with whom an experience can be shared.

I wonder if there is a way that I can help bridge the gap between breast and other cancers.  Something to consider for sure.

Day 209 - Timing

The radiation department was running way behind again today.  I didn't get my treatment until 4:15 so they were running on an hour delay.  I was also supposed to see the doctor for a quick check in today, but she was so behind that I ended up seeing another doctor.  I heard my doctor talking in the next room (she has a very distinctive voice) and could tell that she was dealing with problems larger than my minor skin discoloration and minor swelling though I couldn't hear exactly what she was saying.

As one of the radiation techs said, it only takes a slight hiccup for them to get behind, and I totally understand.  If one person is running late for his/her appointment, the other carefully timed appointments get pushed back.  I try to be patient and succeed most of the time.  These treatments have a finite end so I need to continue to be patient and just go with the process.

It is unfortunate that these treatments are so disruptive to my work day, but again, they are temporary.  I will be done with them before I know it and will be turned out to the great big world of no more cancer treatment. I look forward to and fear that world all at the same time.