Day 38 - Visits

We had 3 awesome visitors today.  My mom and Glen got down to Charleston around 11:30 this morning.  I was just very happy to have them here.  We went out to lunch, they took Henry to play, and we just had a nice time visiting.  My mom's school had also amassed quite the collection of gifts for me (and some for Henry too), and I was simply overwhelmed going through them.  Such thoughtfulness and generosity.

With the car from Greenville also came an entire cooler full of homemade lemon ice, the ultimate barfy comfort food.  My mom made a triple batch of my Nena's recipe, and froze it in individual containers.  I am stocked and ready to go.  It is so delicious.

After we went out for lunch, our friend Michael came over for the big hair cut.  Mom and Glen took Henry to a local museum while Mike, Michael and I had a drink and he cut my hair. I didn't quite go for the buzz cut today but came pretty close.  My hair is as short as humanly possible sans clippers, and I like it.  I think that it will be easier to lose being this short, and if it gets to the point where I need to shave it, I will just take care of it.

Michael also surprised me with a wig that he picked out for me. It is really cute and looks a lot like the haircut that he did for me a few weeks ago (he's got excellent taste and I have left all big hair decisions in his capable hands for the last 6 years).  I tried it on, and he cut the wig to make it look less wig-like (his words).  It is really cute and something that I will enjoy wearing when I want to look more like me.

Henry was absolute fascinated by the wig.  I tried it on for him and even let him give it a go.  It is so funny.  We got a moderately decent picture of him wearing it.

I woke up hungry today which is an excellent sign and something that has not happened in several days.  I ate a small breakfast and a fair amount of lunch.  There were some waves of nausea throughout the day, but they were not nearly as bad as they have been.  I was able to manage them without too much issue.

Today was a day that I will not forget for a long time for so many reasons.  I am just so grateful for the support and the love that I have all around me.  My family left around 6pm, and we all kind of crashed after that.  I was tired and emotional from the day, and Henry was pretty much the same. He gets all wound up when we have guests.

Day 37 - It's Official

I hosted a staff meeting in regard to my company's April event this afternoon, and officially made the announcement that I will not be there.  I didn't cry (strict no crying at work rule), but it was hard to get the words out.  I've been planning this particular annual event (The Wireless Infrastructure Show) since 2008, and it has been the biggest thing that I've ever done in my career.  This year's event will be the best one yet.  I just know it, and I am so sorry that I will not be able to see it in person.  The exhibit hall is sold out for the first time ever, our registration numbers are pacing far ahead of previous years, and we've got some really exciting and new things planned for this year.

I will absolutely be there in spirit, but will not be there in person.  It makes me sad, and it is hard for me to talk about.  Of course, I've got way bigger fish to fry this year, and there will be more trade shows for me to plan and attend in the future.  I just get such a thrill seeing all of our team's hard work come to fruition at an event.  It's the most satisfying part of my job.  I walk into a blank space at a hotel or convention center and see our show take shape right before my eyes.  I love it, and I find that all of us meeting planners love that.  We're a rare breed, you know.

Instead of being there, I'll probably just be annoying sitting at home.  I'll be texting staff members for updates and trying to get as much of the scoop as possible while I am back at home.  They're probably really looking forward to my stalking!  I imagine that I will have my usual pre-event adrenaline surge and nerves from a distance.  I become almost robotic at events...can survive on very little sleep and very little food.  I just go and go until the end then I crash hard.  That is part of the reason that it would not be wise for me to be at the show this year.  I push my normally healthy self too hard so there is no way that my current self could handle that much stress, lack of sleep, and lack of nutrition.  That does not even factor in the germ exposure from air travel and being around 2000 of my closest wireless industry colleagues. 

It's ok though.  We've got a fantastic team in place in which I have the utmost confidence.  They make me so proud and are going to do such a wonderful job.  And they also know that I will be a phone call away if I can provide guidance at any time.  I won't get to see them shine this year either, but I know that they will tell me about all of the highs and lows of the conference (there won't be many, if any, lows though).

Most of this year is going to be focused on doing what I have to do to heal.  I know that, and I am thankful to be able to have the support needed to have that focus.  I think that this will also be a good lesson in letting go for me. I've got some controlling tendencies (surprised?), and it is better for me to back off on that a little bit.

Still not feeling so great today.  The nausea has not backed down too much.  I was able to get a decent amount of food down, but it does not taste so great, and I have to sometimes convince myself to do it. Hopefully things will start to look up tomorrow.

I am looking forward to the weekend, and, dare I say, even looking forward to my hair cut.  I just need to get it over with at this point. My mom and Glen are coming into down for the day tomorrow, and we'll just have some time to relax and visit.  Henry has also requested that he and I make banana chocolate chip muffins tomorrow morning.  Can do, buddy!  He loves to help in the kitchen, especially when baked goods are involved.

Day 36 - Bravery

Since my diagnosis, many people have remarked on my bravery for being so open with my journey with cancer.  It is a very nice thing to say and something that I appreciate because it is a very powerful word, but I don't necessarily feel brave.*  I feel that I would be hiding something extremely major in my life if I didn't share what I share, and I won't let cancer force me into hiding.  I am still very much here and very much alive (working on the 'well' piece there) so my experience is getting out there.

I have found that reading and hearing about other people's experiences with cancer has been extremely helpful for me, and maybe this blog or some Facebook posts will help someone else at some point.  Everyone's experience with cancer is different and highly personalized (I know that I've said that before on this blog), but hearing from others provides great comfort. I've often heard from well-meaning family members and friends "you should talk to [insert name here]."  I thought that I would get tired of having those conversations, but I relish them.

I've also turned to social media for support during this time.  There are numerous Facebook groups for cancer survivors, and I am a member of 3 of them, one specific to triple negative breast cancer.  I am not an active poster in any of the groups, but I like to read other posts and will comment on them occasionally.  There is a great big world out there full of people waging their own wars against cancer, and I am glad that we have the tools to find each other.

Others have cited their appreciation for me sharing something so personal with them.  I don't feel like I get too personal with details that I share, but I do find that certain words and medical terminology no longer faze me at all so maybe some TMI does slip every once in a while.  It's funny how the paradigm shifts after a cancer diagnosis.  Words, bodily functions, body parts, and ways of thinking simply change.

There is no real point to this post other than to say that I don't think that I am necessarily any more brave than anyone else.  I am putting this out there to help my family and friends better understand where I am right now, and I also put it out there in case anyone else who needs to hear about my experience finds it.  I also write this for me.  My mind has been quite the interesting place lately, and putting these words down helps me to control my thoughts (some are pretty tough) and to organize my feelings.  I think that it will be therapeutic for me to go back and read old posts one day.  Maybe not though. At the end of this journey, I may just want to stop coming to this place.  We'll see.

I can promise you that I will continue to do everything humanly possible to combat this nasty disease. Everything.  I've got big plans with my sweet family that I intend to keep. Maybe that makes me brave, but I think that it just makes me human.

Along the lines of doing everything humanly possible, I am about midway through a book called Surviving "Terminal" Cancer that was sent to me by one of my uncles.  I know.  The title is super scary. The content, however, is absolutely astounding.  The author of the book was diagnosed with the worst of all brain tumors - glioblastoma. It is almost always fatal, and this man was given 12-18 months to live in 1995... He worked tirelessly to find ways to supplement his traditional treatment plan that included chemo, radiation, and surgery.  He battled with his medical team, found ways to get supplemental medications to create a cancer fighting "cocktail" as he described it.  He credits this work with saving his life.  He's a 20-year survivor (almost to the day) after being told that he had 18 months to live, max.

Now I'm not there and pray that I never will be, but reading this book gives me more motivation to work on a "what happens next" plan with my medical team.  I know this may seem premature given the fact that I am just beginning treatment, but these things could take time so I am starting now.

I felt pretty dreadful all day today.  Very nauseous.  I seem to be among the lucky few for which the anti-nausea meds do not work very well.  I hopefully only have 1-2 more days until the fog lifts for this cycle and I feel more normal. 

*This is not a fish for compliments.  I promise. 

Day 35 - The Cancer Center

I hate the cancer center.  I hate it because it has to exist (don't get me wrong, though, I am glad that it is there to help me which I will cover below).  I hate seeing other patients there, especially some who are quite elderly because I don't want them to need to be there. I always try to offer a smile or a word or two of encouragement to help brighten their time at the cancer center.  They may like it or may just think that I am weird.  Either is fine. I just don't like walking through the doors to that center, and I wish that no one had to do it. 

The cancer center where I receive my treatments is a beautiful facility.  It has two infusion rooms, a boutique that sells various products to help those in treatment, a cafe that apparently has great food and excellent hospital-style crushed ice,  an outdoor terrace with lounge chairs and fountains, and many many doctors and nurses.

I hate that any cancer has to exist, mind you.  I don't have have anything reason to hate mine more than others.  I am just sorry that anyone has to walk through the doors of any cancer center.  I am, however, grateful for the doctors, nurses and staff at the cancer center.  They have dedicated their professional lives to helping people like me, and I am sure that cancer creeps into their personal lives on a daily basis, much like any job shows up during non-work hours. In fact, I called someone who works at the cancer center on her day off when I was first diagnosed. She graciously took my call and continues to be a very important part of my support team.

The people working at my cancer center are some of the nicest I have ever met.  They have known me by name since my second appointment and are always available for a chat, some kind words or advice.  I find that I have gotten much more chatty since my diagnosis...much more willing to slow down and listen to someone else or take the time to offer up my thoughts and feelings.  It's been a nice change to not be so rushed and focused on "what's next."  I am very lucky to have these people in my life, and I would like to find a way to be able to thank them for all that they do for me and their other patients. I've got something in mind to take to them for my last chemo treatment.  

I was pretty barfy feeling all day today.  I think that it is just going to happen for this type of chemo. I was able to eat a bit more today than I was after my first treatment so I think that the 3rd pill is helping some, but it is not providing the goal of "no nausea."  My doctor said that they could reduce my chemo dosage if I keep getting bad nausea, but I don't want to do that since the chemo is working so well.

My hair is starting to jump ship.  Just strand-by-strand right now, but I can't run my fingers through it without snagging a few hairs on the way.  Clumps will start coming out any day now so I have a date for a buzz cut and champagne on Saturday.  May as well toast to the hair that was.  Henry is totally on board and thoroughly entertained by the fact that I will not have any hair. 

Receiving my Neulasta shot was uneventful though it does make my face bright red, and I hope that the Claritin I am taking continues to ward off any associated bone pain.  Barfiness and deep bone aches do not sound like a nice combination.

Day 34 - Shrinkage

Ladies and Gentlemen, we have shrinkage.  There are so many ways to take this, but I am going to stick to an uncharacteristically mature way (though I hope that this prompts some jokes in your household).  The tumor has shrunk in a very noticeable way.  Some of the shrinkage is due to surgical swelling going down from having a marker placed near the tumor, but most of the shrinkage is due to the chemo.  The tape measure said that the length of the tumor has been reduced by almost half.  This is pretty big news after one round of chemo, and my doctor was visibly pleased and maybe a little bit surprised.

This also means that, if there are any cancer cells floating around elsewhere in my body, they should also be quite affected by the chemo.  Makes sitting in that chair much easier.  I was glad to have that very visible/palpable results from the first treatment, and I hope that things continue to follow that trend.

I also gave my doctor my to-do/to-research note, and he was pleased about the TNBC clinical trial that I brought up.  He said that most TNBC clinical trials are for stage IV patients and that there is not as much being done for earlier stage, but I am almost positive that the one that I brought up is for earlier stage patients.  He's going to look into it for me, and we'll talk more about it next time I am there.

The doctor also told me "we don't want you to lose too much more weight." Never have I ever heard those words.  I've still got a few pounds to spare, but I will try to not lose much more.  He also gave me a third anti-nausea medicine that I can take along with the two that I took last time.  They would like to see no nausea at all so I will add that medicine to the cocktail.  I also took two of the anti-nausea meds immediately following chemo. Being on top of it vs. taking after I already feel badly is going to be important. As the day wore on, today I became fairly nauseous.  Maybe a 5 on a scale of 1-10 which is better than last time. I'll take the new med before bed, and hopefully that will help things even more.

The results of my BRCA (and about 20 other genetic mutations) came back negative so I do not have the "breast cancer gene."  That is a good thing as it is likely that surgery does not have to be quite as drastic. I am still going to have surgery over the summer, but I may be a candidate for a lumpectomy vs. a bilateral mastectomy given the genetic testing results.  We'll see, though.  I've got a while before I have to make any decisions like that and will rely heavily upon my oncologist and surgeon for guidance there once we get deeper into chemo.

In other good news, my doctor said that I can GO BACK TO THE GYM!!  I was originally told no gym on days 6-12 after each chemo cycle due to a dip in my immune system, but I asked him to reconsider and he did.  Last round, I felt almost human on day 6 and was feeling really great again toward the end of the two-week period. My white blood counts came back really strong which means that my immune system didn't take as big of a hit as it could have. I was made to promise that I will turn around and leave the gym if I see someone who is visibly sick (coughing, sneezing, etc).  There could be some false alarms there because the pollen is starting to come out in Charleston, but I agreed to that and will keep my word.

No way will I be able to work out terribly (or probably even remotely) hard, but I so want to go back, and I am glad that I got the green light there.  I plan to go to classes during somewhat off hours so that it is less crowded.  My 5:15am classes are not happening...too crowded, and I just don't want to get up that early right now.  I am really happy about that and will set up a class as soon as the nausea wears off and I don't have to take the meds anymore.

Today was a happy day for me. I am so grateful and relieved that the tumor is responding, I am grateful that I have a medical team that I trust and who listens to me, and I continue to be so incredibly grateful for the support that I have received over these past several weeks.

I'm going to take some more pills soon and head to bed.  I have to get my Neulasta shot tomorrow and will then have a break from the cancer center.

Day 33 - Nerves

I thought that I would not be as anxious on the eve of my second chemo infusion, but I am pretty nervous about being back in the chair and about not feeling great for the rest of the week.  I, obviously, have a better idea of what to expect tomorrow but also hear others saying that the side effects of each chemo treatment become increasingly worse as it builds in the system.  I am not going to go into tomorrow thinking that I could feel worse than last time, but I know that it is a possibility.

I am excited to be able to say that I only have 6 more chemo treatments after tomorrow.  That sounds even more manageable than my original 8, and soon I will be at the halfway mark.  If all goes according to plan, April 7 will mark the halfway point in my chemo infusions.  That is not far away at all. 

I tried to make some big batches of food for Henry and Mike to have over the next couple of days, and we've got a very full freezer of other options as well.  Last time, I hardly had an appetite and did zero cooking. I love to cook so it felt weird to me to not get into the kitchen and cook dinner after work.  Temporary though. Only temporary. 

I've got a list of questions to ask my oncologist tomorrow and the previously mentioned leave-behind list for him.  I still feel unsure of what I can and cannot do during chemo.  For example, can I go and get a massage?  I've got two gift certificates staring me in the face, and now seems like a great time to use them.  I also really need an eyebrow wax.  Kind of funny to think about since I will probably lose my eyebrows at some point during chemo, but they need some upkeep in the meantime.  Can I do that?

My list tomorrow is color-coded as well.
Green = a copy of the leave-behind questions for the doctor so that I don't forget what I have asked him to look into.
Pink = random questions from me such as massage and eyebrow wax.  I'm also going to ask him if he'll reconsider the whole "you can't go to the gym for 6 days during every treatment cycle."  Those are the days when I feel well!
Purple = to bring to chemo tomorrow. Must bring my bag of supplies so that I've got plenty to do during the drip.

I really like to have a variety of colors of pens.  Keeps things fresh.  I don't think that it really matters what color my handwriting is, though, because it is unlikely that anyone would really be able to read the notes that I write for myself.  A friend of mine says that my cursive handwriting looks like a series of bubbles and waves vs. actual words.

One night, she was at my house, and we may or may not have had some cocktails (I'll never tell), and I started writing out words on a chalkboard that we have in our house to see if she could read them.  She couldn't, and started to draw pictures for me of what my handwriting looks like.  The only way that I can replicate the pictures that she drew on a keyboard is like this ~~~~~~~. I don't think that I've ever laughed so much in my life.  That happened years ago, and I still think about it when I walk by the room with the chalkboard and smile to myself.  It was SO funny. I'll randomly text her about it on occasion, and I hope that she is reading this and smiling.

I've always admired nice penmanship, and I think that it partially because mine is not so nice.  I love fonts and design and am always impressed with those who have beautiful handwriting.  So for all of you who have sent me notes over the years, I am paying attention.

Big night tonight - Season finale of The Bachelor. Every time Mike complains about watching it and I  offer to change the channel, he says "ok ok fine.  I'll watch."  I think that he is secretly as entertained as I but won't admit it as readily.  This ultra-mindless TV is the perfect thing to watch tonight when my nerves are a bit nervy.

Day 32 - Warmth

It was so nice and warm outside today...just perfect.  I see up a chair in the driveway and watched Henry ride his bike up and down the street over and over again (with the help of Uncle Frank).  Santa brought Henry a Spiderman bike, and we couldn't really tell how excited Henry was about the gift at first.  Don't get me wrong, he liked it at first sight, but wasn't exactly jumping up and down about it.  Over the past few months, though, he's shown a lot more interest in the bike and has gotten pretty good at riding it.

He uses and needs training wheels, and he also needs some kind of device to help him keep his eyes on the road vs. his feet.  No such device exists, but I would buy it if it did.  Henry stares down at his feet and ends up narrowly missing mailboxes, and regularly runs off of the road and tips over.  We're working on it.  He did better today than he had previously, and he's got some major speed.  My brother got a workout chasing him up and down the street.

AT&T delivered on what tends to be excellent customer service and had our cable and internet fixed by 11am.  We got a knock on the door around 10:30 from the facilities guy who said that he had been working on the issue all morning.  I am back in business for tomorrow morning. My company will be relieved.

After Franklin got on the road, Henry and I took advantage of our newly working internet and cable.  Paw Patrol was on in full effect, and I caught up on my internet surfing.

It was a lovely weekend, and I am gearing up for a big week this week. I am eager to see my oncologist on Tuesday to talk about the first treatment and see if we can tell if the tumor responded.  I think that it did.  Time to hit it again with the hard stuff.  When I told my oncologist that I was nervous right before my first treatment, part of his response was "the cancer should be even more nervous."  I like how he thinks.