Thursday, April 30, 2015

Day 85 - Relief

My event officially ended today, and I am so relieved.  I am always relieved when an event is over, but I am even more relieved this year due to the extreme extenuating circumstances under which it was executed.  The event was a success all around, and I attribute that to a massive amount of teamwork, hiring excellent vendors and pooling of resources.  I am really pleased with the end product and know that others are as well.

It's time to wrap this one up, put a bow on it, and move onto the fall event.  It is also time to start looking at venues for 2018 for our large event.  These things require so much space that they have to be booked very far out.  We're set for 2016 and 2017 but need to give serious thought to 2018.

It is also time to allow myself a few more sick days here and there.  I owe that to me and my health and plan to use more of the sick time that I have. I am also taking tomorrow off to spend with Henry, Mike and Ben.  A day off is definitely in order.

I've also scheduled an appointment with a psychologist who has experience with cancer patients for mid-May.  I am very much looking forward to the appointment and to the opportunity to speak with a professional who also has a very objective perspective on my life.  Cancer difficult both physically and mentally.  I am tackling the physical side of things but have not given as much focus as necessary to the mental/emotional so am making that a priority.  The doctor that I will see came recommended by the nurse navigator at the cancer center, and I enjoyed the brief phone conversation that we had so I am optimistic that she will be a good fit for me.

The rain finally stopped so I was able to go for a nice long walk during my lunch break today. I would really like to slowly get back into running too, and there is no reason that I can't as long as I am feeling well.  My radiation oncologist told me that I will be restricted from any real upper body workouts after surgery and during radiation.  She said that any significant stress on my upper body during radiation could cause lymphadema which is something that I want to avoid if at all possible. Lymphadema is swelling in an arm (or leg) caused by trauma to the lymphatic system.  I will surely have some lymph nodes removed during surgery (almost everyone does no matter if cancer is present or not) which can cause lymphadema.

All that said, I will have to focus on mostly lower body exercises during that time and up to a month after radiation so I may as well try to get into a good routine sooner rather than later.  I think that I will also get a bike at some point so that I can go for rides with Henry and also utilize a new bike path that is right outside of my neighborhood. I told Mike that a bike would be a good idea for Mother's Day.....HINT HINT.  It wasn't exactly a hint.

My brother arrived at 5pm today, and I am so glad that he is here. Henry was beside himself.  He's been talking about Uncle B's arrival all week long.  It will be fun to spend time with him this weekend.  Right now, we're going to settle in and watch the NFL draft...I'm just glad to have a break from golf.

Wednesday, April 29, 2015

Day 84 - Webinar

I listened to a TNBC webinar during lunch today that was very informative.  It was a medical update presented by a doctor at Memorial Sloan Kettering in New York City, and it reaffirmed some of the treatment decisions that I have made and also talked about some clinical trials/additional treatments that may become available for TNBC in the future.  One particular focus of the webinar was the addition of carboplain to current chemo protocol and that clinical trials found that carbo increased the likelihood of a complete response by about 25%.  That is a pretty significant figure and it makes me glad that I have added carboplatin to my regimen.

She also recommended seeking out non-chemo clinical trials for those who do not achieve a complete response at surgery so I will keep that in the back of my mind just in case.  I like listening to these types of presentations, and I find some comfort in the fact that TNBC is heavily researched these days.

Other types of breast cancer have what are called targeted therapies to help fight the disease. These targeted therapies are able to take what fuels the tumor and help shut it down. Estrogen positive breast cancer, for example, has a drug called tamoxifen (among a few others) for treatment, and HER2 (a protein) positive breast cancer can be treated with a drug called herceptin.  TNBC has nothing comparable to tamoxifen or herceptin yet because researchers still aren't clear as to what exactly fuels triple negative breast cancer.  It's a bit of mystery though there have been some studies that suggest that researchers are honing in on certain things.  Chemo, surgery, and radiation are all that we have for now.

It was pretty rainy and gross in my fair city today.  It would have been a perfect day to settle in with some movies and naps, but real life responsibilities took priority.  My show continues to go well, and today was the last big day.  There is a very small meeting tomorrow that will require some attention, but that is easy enough for the people there to manage.  I had to prepare a report for my boss to present to our board of directors at their quarterly meeting this afternoon, and I hope that the report was well-received.

My brother Ben is coming into town tomorrow night for the weekend, and I am so excited to see him.  We have not seen him since Christmas when things were a little bit hectic so it will be fun to have a whole weekend to hang out.  I am hopeful that the weather allows us to go to the beach!
 

Tuesday, April 28, 2015

Day 83 - Rads

In my TNBC Facebook group, radiation is often referred to as "rads," and since I've already used "radiate" as a post title, I decided to go with "rads" today.  I don't think that I will often call radiation "rads," but now you'll know what it means.

I met with the radiation oncologist today and liked her very much.  She spent at least 45 minutes giving me her undivided attention and explaining what a radiation program for me could/would look like.  I really appreciate her time and thorough explanation.  Her perspective on TNBC was interesting in that she said that she recommends radiation for people with TNBC no matter what surgical option they choose because TNBC is aggressive and has a high grade, meaning that it is fast-growing.  She put her surgical thoughts quite simply "you'll be a great candidate for a lumpectomy so that is what I think you should do. If you find that you can't sleep at night because you wish that you had a bilateral mastectomy, you can always do that later."  I had not really thought of it that way.  She's right, of course.

So it looks like I'll have radiation no matter what surgical option I choose, and the surgical decision is still ultimately mine.  I am about 90% sure that I will choose to do a lumpectomy.  There is no real reason to do a bilateral mastectomy at this point so why put myself through major surgery and months of reconstruction if I don't have to. I think that part of me worries that we're missing something on my right side, but 2 ultrasounds, a mammogram, and an MRI all tell me otherwise so I should probably relax a little bit on that.

Radiation is not without risks, though.  My particular radiation will be very near my heart and left lung so there is a risk of damage to both.  The lung is more at risk than the heart.  There is a sliver of lung behind the chest wall that will be in the line of fire, and there is just nothing that can be done about that.  The doctor said that the damage, if any, will be minimal.  With radiation, you also run the risk of developing a secondary radiation-induced cancer.  It is, again, rare but possible.  That possibility exists with chemo as well. Most likely, I will experience some fatigue and skin changes that can range from a slight "sunburn" to blistering and cracking in the skin.  Unlike chemo, the side effects from radiation are delayed, so we won't really know how I will react until we are about 2-3 weeks into treatment.

The benefits of radiation far outweigh the potential drawbacks so it looks like "rads" are on the docket for me sometime this summer.  I recently saw an analogy related to cancer treatment that resonated with me.  You drop a glass in your kitchen - surgery picks up the big pieces, radiation tackles the small pieces that you can't pick up, and chemo sweeps up the tiny shards that flew all the way across the room.  I want to make sure that ALL of the pieces of that broken glass get picked up.

I am likely to have 28 standard radiation treatments and 5-6 boots.  The boosts will focus exclusively on the pocket where the cancer was removed to make sure that the surgical site is 100% sanitized.  The final plan there will depend on the pathology report from my surgery, but the above is what will probably happen.

I talked to the doctor about my goal of attending my company's October 27-28 event in LA, and she seemed to think that goal is achievable.  If we start radiation in mid-August or even the beginning of September, I should be free and clear! The doctor also commented on how she was pleased with how well I look after a brief exam.  She said that some patients who are on chemo really look sick but I do not. It was nice to hear that because some days, I don't feel like I look so great. 

In non-radiation news, I had a nice evening out with some members of the Young Survival Coalition's Charleston Face to Face peer group.  They get together for dinner once a month, and I am glad that I was able to join them.  It was a pretty small group, but it was good to meet some others in my age bracket who can relate to my experience.  I'm not much of a "joiner" and a moderate, at best, networker, but this is different.  I am pretty eager to meet others my age who are either going through or have been through breast cancer treatment. The group was really nice, and I look forward to the next time we get together.  I'll definitely keep going.

Monday, April 27, 2015

Day 82 - Walk

I went for a fairly long walk during my lunch break today. I took the dog for a quick lap then dropped her off at home and kept going (after taking a quick break to answer a few emails). Despite the fact that our dog is a total and complete spaz, she can't hang for long walks. I was able to walk faster than a stroll for once in a long while, and it felt good to get my heart rate up (on purpose) for a bit.

My event is going well so far...I've been getting regular reports from Florida for which I am very grateful.  There were a few proverbial fires that had to be put out, and I am sure that there will be more, but that is the nature of the beast.  I am very happy to report that we have exceeded our registration goals, both in terms of budget and number of attendees and will still be accepting walk-up registrants so those numbers will keep climbing.  I have to prepare a report for my boss to present to our Board of Directors on Wednesday, and it will be a happy update. 

A new friend of mine had her first chemo today.  She's 20-years old and had to leave college at the end of her sophomore year to be treated for bone cancer.  I really hate cancer.  Why did cancer happen to her? She's doing well so far, and I hope that trend continues for the rest of the week. 

I have an appointment with the radiation oncologist tomorrow and am working on a list of questions for her.  I was filling out my intake paperwork, and one question struck me as funny "is there anything that you are concerned about?"  Um, yes.  I am concerned that I have cancer.  I used to breeze through doctors' new patient information packets.  Now, I have a list of medications that is a mile long, and I have myriad other complaint and issues to note.  I guess I will never be considered an easy patient ever again.

I am also supposed to go to the dentist for a cleaning next week.  I can't confirm that appointment until Friday when I am to get blood work again to see if my counts are ok enough to go to the dentist.  I had to call the dentist's office and go into that whole story today, and they also told me to ask my oncologist if I was allowed to have x-rays or needed to skip them this time.  So much to think about these days. 

I took Henry to school this morning, and a little girl in his class came right up to me and asked "why don't you have any hair?  Can I see your head?"  So I took off my hat and told her that I have to take some medicine that makes my hair fall out.  She gave me a bit of a skeptical look as though she didn't believe my story, but finally accepted it and moved on.  Teachable moment, I suppose.

My mom gave Henry a very very large stuffed giraffe for Valentine's Day this year, and he decided to name the giraffe "Mother."  It makes me laugh every time when he says "Can I bring Mother downstairs? Will you please make sure that Mother stays in my bed all day?"  Mother the giraffe.

Sunday, April 26, 2015

Day 81 - Strawberry Fields

We live near (very near) a quite rural area where there are many farms.  We go to one particular farm for our pumpkins every October, another stocks a produce stand near our house, and there is another farm that offers strawberry picking in the spring.  We had never been, but that changed today.  The farm is not regularly open on Sundays so they said to call in advance to find out, and thankfully they were open today.

Mike and I both have fond memories of strawberry picking (my Grandmother went every year, and I joined her when I could) so we were happy to be able to take Henry. Henry loved it.  He spent a lot of time carefully selecting ripe strawberries and steering clear from ones that were "mushed."  It was a really nice way to spend a few hours, and we've got about 5 pounds of fresh strawberries to show for it.


Mike declined my offer to make a strawberry pie (CRAZY) but asked for strawberry shortcakes tonight.  Easier on me, but how can one turn down a strawberry pie?  He was clearly never lucky enough to have my Nena's strawberry pie.  Boy was that good.

I also picked up some fresh beets from the farm to have for dinner tonight.  I love beets so will roast them have have them with a little goat cheese...one of my very favorite food combinations.  My obsession with beets and goat cheese started on our honeymoon when I had that at a restaurant called Bistro Jeanty in Napa Valley.  So good.

I am happy to report that I was as involved in my event as possible today.  Today was a big setup day, and I was able to answer a lot of questions, provide input, and see pictures of everything coming together.  I've never been happier to spend part of my weekend answering work calls, texts and emails.  A bit sick of me, but I am glad that I am involved and needed.

This was a really great weekend.  I am so happy and grateful that I felt well and that we were able to enjoy some time as a family.  Sometimes we are moving too fast for our own good and forget to slow down and have a little bit of fun.

Saturday, April 25, 2015

Day 80 - Movies

Henry and I had a great movie date today.  The weather here was pretty suspect all day so we stuck to the indoors and went to see Home.  It was slightly strange and pretty cute.  Henry loved it, and I loved that he loved it.  He and I shared a popcorn, some waters and a lot of laughs during the movie.  It was a fun way to spend the afternoon.

We followed our movie outing with a trip to the grocery store, and those two activities took most of the energy that I had.  I am so glad that I got to have some quality time with my little man.  At one point during the day today, it hit me that I would have never managed a solo trip to the movies and grocery store with Henry the weekend after my AC chemo, but I didn't think twice about doing such today.  Very encouraging. 

I don't want to upset the universe here, but I just may have two weeks of feeling well ahead of me.  Wouldn't that be so nice.  I still don't have a ton of energy, but it seems to be coming back a little bit.  I am a little bit worried about the fate of my fingernails.  One potential side effect of taxol is weakening, discoloration, or even losing nails.  My nails feel a little strange when I type.  I am going to keep them short and hope for the best. 

Thankfully, I have not had any more dizziness and have not floated away from all of the water that I am consuming.  I am trying to ward off any future dehydration issues.

I did a little bit of event-related work while Mike and Henry did a few quick errands this afternoon. Henry has been really into puzzles lately so he and Mike went out to get a new one.  Mike actually likes puzzles too so they can work on the new one together.  I am not the biggest fan of things like puzzles and board games so let the guys share those bonding moments. 

Someone in my TNBC Facebook group asked the group if they thought that stress contributed to their cancer.  So many people respond with a resounding yes, but I was an outlier.  I think that cancer is mainly attributed to crap luck.  My life was not insanely stressful when I was diagnosed, and I was on the healthier side of the scale.  Sure, there are decisions that one can make that can increase the likelihood of cancer, but I think that it is mostly just a random biological fluke.

Today was a great day.  Perfect balance of relaxation and fun.  I am so grateful that I am feeling well and was able to fully enjoy today.

Friday, April 24, 2015

Day 79 - Dizzy

Last night ended up being a pretty weird night.  After I posted about how I was feeling better with this round of chemo, I got really dizzy a few times and had to hit the deck in two different places in my house.  I was trying to move from one location to another (twice) and got so dizzy that I was afraid that I would pass out if I didn't sit down.  It was short-lived and has not come back.  Had it, we would have been on the phone with the doctor asap.  I also got sick to my stomach trying to take one of my nausea pills, but I think that I just had too much liquid at one time.  That was also short-lived and an isolated incident.  I did not eat much yesterday (was just not up for it) so wonder if my blood sugar just go really low. Who knows.  I have so many things going on in my system right now that it is hard to pinpoint the cause of anything.

I did call my doctor this morning just to run what happened past him (want to be safe here), and he had me come in for some blood work and to see the nurse practitioner.  They took my vitals and determined that my blood pressure was going way down and my heart rate was going way up every time I stood up and suggested that it could be caused by dehydration.  I feel like all I do is drink water all day long, but perhaps I don't drink enough.  I had an IV bag of fluids over the course of an hour and was sent on my merry way with instructions to "push fluids" over the weekend.  My blood work all came back fine for the most part...my potassium was a hair low, but no one was concerned about that.  I am relieved by that.

The nurse who took my vitals the first time seemed really alarmed by my heart rate.  So much so that she walked me down to the next room where I had to go vs. sending me alone.  Subsequent nurses took my vitals with me in various positions - laying down, sitting up, standing up - and were not as alarmed. A final BP/heart rate check after I had my IV fluids indicated that they helped, and I was unhooked and dismissed. 

I hesitated to post this because I don't want people to worry about me, but I endeavor to be honest and open so that people can see all sides of this journey.  One side just happens to be some extreme dizziness on a Thursday night followed by my third trip to the cancer center this week. I guess that it is just safe to assume that people worry about me, in general.  I think that there is always some worry involved when someone you love has a serious illness. 

I am also a bit sore and tired.  The new chemo is known to cause muscle and joint aches.  They are not too bad, but a bit noticeable.  Advil, heating pads, and epsom salt baths seem to do the trick.  So many tricks of the chemo trade!  I am glad to have all of these resources at my disposal, and pity those who had chemo years and years ago who did not have access to such.  I imagine that chemo was truly debilitating decades ago.  While I find it to be very frustrating and sometimes difficult, it is not debilitating.  I am able to manage at approximately 75% capacity.  That is my best estimate.

After a somewhat adventurous day, we had a nice calm evening at home with some delivery pizza, snuggles on the couch, lots and lots of water, and an early bedtime for me.

I got a little teary bidding staff members farewell today, but that is to be expected.  I've been promised regular updates, and a friend created a way for me to track all of the social media that will be going on during the event so I will be well-informed.

So today was more than I bargained for, but that is ok.  This chemo is keeping me on my toes.

Thursday, April 23, 2015

Day 78 - Packing

I should be trying on my business clothes and praying that they fit today so that they can be packed for my show.  I am not, though.  I am sitting at my desk with a heating pad strapped to my back frantically making sure that all of the people who will be at the show have what they need for a successful event. 

My pre-event packing ritual is borderline comical and takes several days to complete.  I take over one of our guest bedrooms and put out all of my outfit options by day then add in a few backup options as well in case of wardrobe malfunctions or mind changes.  I also bring as many pairs of dress shoes as I can possibly fit into my bag.  The key to being on one's feet for 4 days straight is to rotate shoes often so that the pain gets spread out to different areas of the foot.  If let the pain get too bad from one pair of shoes, you may as well kiss your ability to walk normally goodbye.  I've made that mistake before and will not do so again. Spread out the pain.

I had my last pre-show staff meeting today during which I went over final logistics and tied up any loose ends.  Everyone is doing to do a great job, and it will be a successful event.  I've got a long list of to-dos to keep me busy and will be on high alert for any needed guidance.  I won't whine too much more about not being there, but it is a big deal for me.  SEEING the event take place is the best part of event planning.  It's so satisfying to see all of our hard work come to life.

I know that I will still be very happy with the end results, and I've obviously got much more important matters to handle here at home.  There will be plenty of other events in my life.

My stomach was ok today.  Not perfect, but not terrible so that is nice.  I was really tired all day though and a little bit achy.  Nothing that I could not manage, but I had that "am I coming down with something" feeling all day today.  Of course, I am not coming down with anything.  That is just the chemo doing it's chemo magic.  I did send Mike out to Walgreen's for their finest heating pad this afternoon.  My back gets sore from sitting at my desk these days, and the heat helps a lot.

This round of chemo shall soon be a distant memory, and I will get to put away the heating pad, nausea meds, advil, insanely early bedtimes, and epsom salt baths until next time.  In the meantime, I will enjoy my senior citizen status and be kind of glad that I am not working my way through an elaborate packing ritual.

Wednesday, April 22, 2015

Day 77 - Aware

Be aware of your body.  Note changes, discomforts, and things that just don't feel right.  I have a friend who recently found a lump in her breast and went directly to the doctor. The doctor did an ultrasound and told her "it's nothing."  She's seeking a second opinion, and I am so proud of her.  Proud of her for being aware, and proud of her for not accepting "it's nothing."  Statistically, it probably is nothing, but she needs to know for sure.  One never knows when he or she will be on the other side of a statistic.

Be aware.  Yell, kick and scream until you get the answers that you need and that make you comfortable. Enough preaching, but it is so important.

I am very happy to report that I feel better today than I did on day 2 after any of my AC treatments. My stomach is not perfect, but it is not NEARLY as bad as it was after previous treatments.  I actually ate a moderately well-balanced dinner which was never possible right after AC.

My main side effect (so far) is just extreme exhaustion.  I tried to combat that with a walk around the block during lunch and am sure to go to bed early tonight.  I was very wired last night so did not go to bed early enough, and I woke up several times during the night. These hot flashes are a real bear.  Covers on, covers off, covers on, covers off.  You get it.

Since my chemo ended so late in the day yesterday, I am not able to get my neulasta shot until tomorrow.  I am fine with that. I'll just go during my lunch break. 

I would also like to publicly thank everyone for reading about my nerves, mopey days, and about my tears.  I was so nervous, and, as predicted, chemo part 2 was not as bad as I had built it up to be.  The fear of the unknown really gets me sometimes.  I could still have some delayed side effects, but these past 24 hours have not been too bad.

I did decide today that I am going to take the day after chemo off for my last three treatments. I have been trying to save up my sick time for surgery, but it looks like my surgery recovery time will be pretty minimal, and I currently have 15 sick days accrued so I think that I can burn three to zonk out after treatment. My show will be over at the end of next week so I will be able to afford a little bit more time out of the office.

I did fine at work today and was able to concentrate better than after my AC treatments, but I am still going to give myself more of a break starting with the next round of chemo.  My body is working very very hard. 

Today was pretty good, all things considered.  I hope that the trend continues.

Tuesday, April 21, 2015

Day 76 - Better The Devil You Know

I have several friends who always have the perfect thing to say to me when life throws me curve balls. I've known one such friend for nearly 9 years.  We worked together in DC when we were mostly fresh out of school (she more so than I), and have remained great friends since then.  I would actually consider her to be more of a sister than a friend, and I can only say that about one other person in my life.  It's so nice to have two sisters that I found in adulthood, and I have many more friendships that remain very strong despite distance and time.  See previous comments about being very fortunate. 

My friend Diane (who I mainly reference above..the other deserves a post all of her own) and I communicate every day, often multiple times per day mainly through text, but we'll pepper in a phone call, in-person trip, or email on occasion. We're both busy with life so text seems to work out best. Last night, after I was expressing angst to her about today, she said "better the devil you know," and I think that is so fitting to my situation.  I get so scared of new because I have been thrown so much new these days.  I was scared of new today, and I still am quite frankly.  I am not sure what kind of side effects I am going to have from this round of chemo, but I know that I will deal with them as necessary and will ultimately be fine.

I sent Mike along once I got settled in the infusion room.  Today's chemo took 5 hours (!!) so there was no need for him to sit and stare at me for that long.  He went home to get some work done and picked me up after he snagged Henry from school today.  I packed half of my belongings to bring with me today given the 5-hour time frame. The Benadryl did not knock me out too badly although it did make me feel a little drunk heavy, and the wi-fi in the infusion room was working well so I was able to get some work done.  My nurse was shocked that I didn't fall asleep. I also did NOT have an allergic reaction to the Taxol portion of my chemo which is a big relief.  Apparently it can cause a rare but severe allergic reaction that manifests itself with shortness of breath, chest pain, and some other scary things.  They watched me very closely and had an emergency kit set up next to me just in case.  Yikes.  If I were going to have a reaction, it would have started very soon after the infusion began.  I was out of the woods quickly and was able to relax a little bit.

There was a woman sitting near me in chemo who was very chatty.  I tried to indulge, but she didn't really want to talk to me.  She wanted to talk at me, and it was probably for the best given the influence of Benadryl.  Her subject matter left me with very mixed emotions though.  She told me all about her metastatic triple negative breast cancer that came back in her lungs just 6 months after she finished treatment, and she also told me about a brain tumor that she recently had surgically removed (this was after I told her that I have TNBC, but I am honestly not even sure that she heard me).   As you might expect, these conversations are tough for me.  It is difficult to balance the appropriate level of empathy with my own fears.  This woman just needed to talk and get it all out, and I was a good listener.  I also know that everyone's story is different and that every diagnosis is different so I don't take her story personally. It was just somewhat unfortunate that she chose me for sharing today. As she walked away, I told her that I would keep her in my thoughts and prayers. She looked surprised and then offered me the same so I think she just needed someone to listen to her for a little while.

The doctor measured my tumor and did an exam, and he is still very happy with the shrinkage.  I am too, and I communicated the ultrasound measurements that my surgeon gave me to my oncologist.  Big celebrations all around.  It has shrunk by approx 70% which is very significant.  My oncologist is also very happy that I am meeting with the radiation oncologist next week and talked about how good she is and how much I will like her.  He knows that I like to gather all of my information before making a final decision so he's probably relieved that I am seeing the radiation oncologist so that I can pepper her with questions vs. him.

My oncologist did tweak the Carboplatin dose slightly.  Based on my height, weight and a few other factors, the computer told him to give me almost 1100 milligrams, but he did not feel comfortable with that.  He reduced it back to just around 900 to help save me from some potential toxicity.  I am ok with that.  That is still a healthy dose, and if it will help minimize some troubles, then fine.  

Here's a picture from today as I debut my bald head on my blog.  As you can see, I have a decent bald head.  It's not nearly as bad as I thought it would be.You might not be able to tell in this picture, but I still have a very very white noggin.  It is funny. I've tried to get a tiny bit of sun on it on occasion, but it is not doing much good.

Chemo #5/Fun With Filters

I am over the proverbial hump with chemo..three treatments left, and the next one will happen in 3 weeks. I have to come back for some blood work at the beginning of May to see if my blood counts have come back high enough for me to see my dentist for a 6-month cleaning.  If they are not high enough, I will postpone the dental appointment until July when chemo is over.

I guess that I am bracing for side effects still, but we will see. My doctor thinks that I will be better than when I was on the AC.  He's the expert, and I am going to hope that he is right about that!

Monday, April 20, 2015

Day 75 - Sensitive

I was SO sensitive all day today...goodness. I hate when I get like that, but it just happens sometimes.  Again, I believe that it stems from me being nervous about tomorrow, and those nerves are manifesting themselves as me being super sensitive.  I was on the verge of tears several times over totally random things.  I almost violated my "no crying at work rule" when talking to my boss about my upcoming event.  He sensed it and made the perfect joke to snap me out of it. Thank goodness....that rule should not be broken.

Mike also gave me a few good pep talks today, and we both agree that it is unlikely that the new chemo will be worse than the old.  KNOCKING ON WOOD.  Universe, please don't give me a hard time for saying that.  Puh-lease.

Today absolutely flew by.  Pre-event weeks are like living in a time warp..it just goes so fast.

I made it to the gym for an 8pm class tonight.  I like to go to the gym on the nights before chemo treatments because it really helps me get my head on straight and work though some of my nerves and fears.  Get those endorphins pumping. I cried some on the way home from nerves and frustration.  I was just not able to work as hard at the gym as I once did, which makes complete sense.  It got to me tonight though. Notice a theme..everything got to me today.

I have a "cancer coach" through the hospital, and I called her today to wish her a happy 5-year anniversary.  She is officially 5 years TNBC-free, which is a very big deal.  After 5 years, the TNBC recurrence rate drops drastically, and one's chance of recurrence matches the general non-breast cancer population.  A big deal.

Today was school picture day for Henry, and we sent him to school in a shirt that says "A is for Awesome" with a camo pattern.  Whoops.  Those pictures are always so bad, but we may have to buy one to commemorate the year that mom and dad forgot about school pictures.  Can't wait to see the pictures.

I am going to pop a few 'roids (have to pre-chemo for this round) and head off to bed...kind of have a feeling that it will not be a terribly restful night.

Sunday, April 19, 2015

Day 74 - Mopey

I was a little bit mopey this morning.  My dad left around 9, and I was sad to see him drive away, and I was just inexplicably mopey for a good long time this morning.  I am not sure why, but I think that I am starting to get nervous about next week.  I am not sure what to expect with my new chemo, and the fear of the unknown is always hard for me.  I guess I will find out soon enough..Tuesday will be here before I know it.

Thankfully, I was able to snap out of whatever funk I was in, and I had a fun afternoon with Henry.  He and I met one of his friends from school at the children's museum downtown, and Henry had an incredible time.  It is so cute to see him play with this friend.  They really love each other, and it is fun to watch their interactions.  Our children's museum is not all that much to write home about, but we had not been in a while, and I appreciated it more this time than on previous visits.  It's small and very manageable, and there are a lot of opportunities for creativity and imagination.  Henry and his friend took advantage of almost all of them.

I had a great time talking to my friend while the kids played.  It helped to further snap me out of my mopes from earlier. 

Quick sidenote - with a few exceptions, I don't like to use other people's names on my blog without their permission. I feel like it is a violation of privacy so that is why I generally do not mention names.  Generally.

After H and I got home, we had a mighty thunderstorm.  I love thunderstorms.  There is something very awe-inspiring about them, and this was a good one.   The sky got black, the thunder boomed, and it rained very hard. We get a lot of thunderstorms in the south as the weather warms up, and I almost always enjoy them unless I get stuck out in one.

I spent a few hours getting some work done in preparation for the big show. Since I don't really know what to expect this week, I am trying to get a head of a few things in case I really feel dreadful or am unable to work during chemo on Tuesday due to my Benadryl cocktail and/or spotty wi-fi at the cancer center. 

As always, the weekend went by way too fast.  It was a great one, though.  I have big week ahead on many levels, and I will try to not let my nerves get the better of me. No promises, though, so sorry in advance, Mike.


Saturday, April 18, 2015

Day 73 - Hollywood

Right before Day 1, I had to take a work trip to Hollywood, Florida to do some pre-event planning for my upcoming conference.  Mike and Henry joined me for this trip, and we stayed for the weekend after I was finished with work.  They made good use of the hotel's pools and beach access while I worked, and we all spent the weekend together after my meeting wrapped up.  It was a really wonderful mini-vacation.  We relaxed, played, went out to dinner, and just enjoyed some time away in a very beautiful place.

Looking back, the trip was really perfectly timed.  I was actually supposed to see my surgeon for him to take a look at the lump right before we went away to Hollywood, and the appointment was cancelled because he was called away to surgery.  I remember being mad that the appointment was cancelled and saying to Mike "I just want him to tell me that the lump is nothing before we go on our trip."  Boy am I glad that my appointment was postponed. The trip to Florida would have been very very different with the dark cloud of "I am afraid that you may have cancer" hanging over my head.

Funny how the universe works sometimes.

Today was a good one.  We went to the aquarium this morning for a few hours.  I love our little aquarium and get a membership to it for my birthday every year.  We watched the scuba diver show in the big tank, fed the stingrays, got to pet a baby alligator, and look at all kinds of fish and other animals.  Going there is one of my favorite ways to spend a few hours, and Henry eats it up.  He is very much into sharks right now so the aquarium is perfect.

We grabbed a quick bite to eat downtown and stopped by the Home Depot for some potting soil and a jalapeño plant.  Someone sent me a beautiful hydrangea that I wanted to plant outside, and Henry has been asking to grow peppers in our back yard so I figured that we should grow some peppers that I like to eat.  I love spicy even though I've had to back off of it a little bit due to my recent digestive woes.  We also had to send a 2-foot snake along to his final reward.  It snuck up on Mike as he was putting the grill away the other night, and Mike "took care of it" but didn't dispose of it so my dad and I handled that unpleasant task.  Sometimes I feel like we live in Deliverance.  There are alligators, snakes, wild boars, deer, and countless other creatures on the prowl around here.

An early dinner at a restaurant called Wild Olive closed out the day.  Wild Olive is a small Italian restaurant near our house on Johns Island, and they just never miss.  The food is always so good.

I joined Twitter (@NTouhill).  I have no idea what I will tweet about, but I felt like it was time to join the Twitter revolution.

Friday, April 17, 2015

Day 72 - Neighbor

Our neighbors who live directly behind us are named Michael and Nancy...kind of funny. We had a good laugh about that when they moved in several years ago. Michael was diagnosed with cancer shortly after I was, and we've been able to offer a lot of support to each other over the past few months. He got some great news yesterday - his chemo is working very well, and his cancer is also melting away.  I am so happy for him and encouraged by his good news.  Michael and I see the same oncologist so often compare notes and tips for dealing with chemo.  I am glad to have him for support.

Our next-door neighbors are also a great part of our support system. They have been known to drop off flowers, leave a container of soup on the front porch, or invite Mike over for dinner on a night when I was not up for cooking or really eating at all.  Their daughter, who is my age, has her own experience with breast cancer so they can relate to what we are going through. 

These are more examples of the truly wonderful people that we have in our lives..we are very fortunate.

I listened to a webinar on TNBC during my lunch break today about making healthy lifestyle choices to prevent recurrence.  I didn't really learn a whole lot new - eat healthy, exercise, don't smoke, wear sunscreen, and manage your weight.  It was worth my time regardless as I endeavor to learn as much as I possibly can about my disease.  I'll be listening to another one on April 29 that is more of a medical update, and I think that one will be much more informative.

Speaking of exercise, I hope that my next type of chemo will allow for more of it.  The A/C got me down pretty badly for an extended period of time, and walks around the block were pretty much all I could manage.  Hopefully chemo part deux will be a bit easier in that department.

My dad arrived a little bit after 5pm, and we're so glad to have him here.  We've got a fun weekend on tap, and I've been loving all of our visitors lately.  It's been nice to see family and friends.  It's always nice, but even nicer during times like these.

Thursday, April 16, 2015

Day 71 - Senior

Wednesday is senior citizen discount day at my local grocery store.  Patrons who meet the age qualifications are given a 5% discount each Wednesday.  For whatever reason, I find myself at the grocery on Wednesdays more often than not, and the place is so crowded.  There are also a lot of mid-aisle conversations going on and checks being written for payment.  Wednesday trips to the grocery store take just a little bit longer.

I went to the store yesterday, and it was very fitting that I was there on senior citizen discount day.  I am basically a senior citizen right now.  Between hot flashes from the Lupron, soreness from the neulasta, and some major digestive issues from chemo, I should be getting a 5% discount too.  You should have seen some of the items in my grocery cart yesterday.  I won't go into detail here, but suffice it to say that my mom had a really good laugh when I told her about them.  My own mother..kidding. I was laughing as I told her too.  One MUST have a sense of humor during times like these.  It is a mandatory coping mechanism.

I took Henry to school this morning, and we had a great jam session on the way.  90s on 9 on Sirius was on fire this morning, starting with Ice Ice Baby.  As soon as it came on, Henry yelled "Mom, it's Ice Ice Baby."  I am glad that he has my appreciation for the finer things in life.   Outkast were also featured, and there are few better ways to start the day than with Andre 3000.

Mike had meetings downtown all day today as part of the College of Charleston's School of Communications advisory board so Henry and I were flying solo all day.  He and I decorated a birthday cake for my dad (more cake!) and had a low key evening.  I ordered Chinese food from a local delivery place. Mike hates Chinese food, and I love it so I took advantage of him being out for dinner.  

I was thinking about two of my cousins the other day.  When they were little and got upset about something, their parents would say "happy, happy, happy" to them to try to encourage them to snap out of whatever toddler woes they were currently facing.  They would often repeat back the words "happy, happy, happy" through tears and in a very pitiful voice which was insanely adorable. Something had me down recently, and I said "happy, happy, happy" to myself several times that day in an attempt to snap myself out of a funk. I think that it worked.  I slapped a smile on my face and did what I could to change my attitude. I can't even remember what I was mopey about so clearly it was not that significant. 

Happy, happy, happy. 

Wednesday, April 15, 2015

Day 70 - Radiate

My surgeon's office is working on setting up an appointment for me with one of the top radiation oncologists in town.  I did a bit of research on her (of course), and her qualifications are really impressive.  I like impressive and will need to be sure that whoever does my radiation is really excellent because the radiation will be taking place on my left side.  They will have to be very careful of my heart and lungs so that nether get damaged during my zapping.

I am still not entirely sure that I will go that route but am mostly sure that I will.  The consultation with the radiation oncologist will certainly help me finalize that decision, and I am glad that my surgeon recommended doing that.  He knows me well, and I appreciate his willingness to help my peace of mind.

My big event for work (The Wireless Infrastructure Show) is in 1.5 weeks!  Things have been a bit nutty at work, but the event is coming together so nicely.  I am so excited for everyone who has put so much hard work into it, including me.  I am going to be constantly refreshing our online registration system for updates and will be texting anyone who will respond to me to see how things are going during the show.  It will be really annoying, and I will try to keep it to as much of a minimum as possible. 

I've already started working on my to-do list for that week so that I can keep myself as busy as possible.  I can start finalizing the financials for the event and working on thank you notes and such.  I'll try to keep myself from going too stir-crazy.

My dad is coming into town this weekend, and I am so excited to see him.  We haven't seen him since Christmas and certainly not since Day 1 so a visit is long overdue.  He saw my bald head via FaceTime on Monday so that won't be too much of a shock to him.

My hair (if you can call it that) is so funny these days.  It is growing in some places on my head and not in others.  I don't really understand that, but I don't understand a lot of what is going on with my body right now so that is ok.  All I know is that it is working really hard to fight this cancer.  I've never been so impressed and horrified by myself all at the same time.  Horrified by some of the side effects..not by my appearance.

I have learned so much about myself during this process and suspect that the learning will continue for a long time.  I never really knew how resilient I am until now.  The other day, my surgeon asked me how many days I take off for each chemo treatment.  When I answered with "none," he looked surprised and kind of laughed and said "good for you. I am glad that you are living your life as normally as you can."  Mike and I talked about that in the car and surmised that these doctors must just see people totally shut down and stop everything.  I absolutely refuse to do that.  I refuse to let cancer take away all of my normal.  Yes, there are people who simply cannot work during cancer treatment for many reasons and some who simply choose not to so that is not a judge.  I am very fortunate to be able to maintain a mostly normal schedule. Very fortunate and mostly normal..that should be the title of a book.

Along similar lines of questioning, Dr. Hawk also asked me I if I was still traveling for work.  And I answered that with a resounding "no." No way, no how.  The rigors of travel would be way too much for me.  So I compromise...still working full time but not traveling.  I think that is fair. 

My benadryl/steroid-laden upcoming chemo may change that entirely anyway. I may need to take a day or two off surrounding each treatment, and that will be ok too.  I've got plenty of sick and vacation time stashed away..the benefit of being at a company for a very long time.

June 9 will be the 7th anniversary of me being at PCIA.  How in the world did that happen?  I've been through so many life experiences while working at this company - got married, moved to Charleston, bought a house, had a child, got cancer (those are some major ones at least).  I'll look forward to adding BEAT CANCER to that list, or as someone recently said "crushing cancer."  I like that - crushing cancer. 

I am grateful for my job, grateful for the wonderful co-workers that I have, and very grateful for all that I have learned over the past 7 years.  I still wonder how they went by so fast. I guess that is what starts to happen at the ripe old age of 33.

Tuesday, April 14, 2015

Day 69 - CarboEd

My oncologist asked me to make an appointment with a nurse for an educational session about the carboplatin chemo that I will get next week.  I had to get my lupron injection today and was able to do some learning at the same time.  It sounds like the carbo isn't exactly going to be a breeze, but I did ask for this additional chemo, and I only have 4 treatments.  I can do 4 treatments.  It is likely that I will experience some nausea on the carbo, which is unfortunate.  I was really hoping to get a break from barfiness, and maybe I still will, but it sounds like I will experience some.  Other side effects can include fatigue, low white blood cell counts, neuropathy, and some other really weird stuff that is very unlikely like ringing in my ears.

The last two side effects would be cause for concern, but the others are pretty standard chemo fare.  The carbo will hit my white blood cells harder than the A/C or the taxol which is why I will be going 3 weeks between treatments instead of 2.  I will also still be getting the neulasta injection the day after each treatment to help with blood cell counts.  So the next 4 chemo infusions will likely suck (I am such a poet), but that is ok.  I will take a few sucky days after each treatment if it means that I will get better. The next treatments will also take at least 4-5 hours so I will have to plan for a very long day at the old cancer center. 

The nurse did ask me if I had really bad morning sickness when I was pregnant with Henry.  I did not, and when I asked her why she asked that, she said that people who have experienced morning sickness tend to get worse nausea with chemo.  Interesting, and I am sad that I am the exception to that rule.

I also kind of spent last night and today waiting for the other shoe to drop, but it never did!  For the past two chemo cycles, I have gotten some additional side effects - bone pain and sore throat - on the Tuesday after each infusion.  The nausea and fatigue were way worse for this round, but maybe I have avoided additional fun. 

I've said it before and will say it again, I like the nurses in my doctor's office so much.  They are so kind, very funny, and full of tips and tricks to make chemo more manageable.  I am very grateful for them.  I am brainstorming something fun to take to them for my last chemo treatment..there will definitely be baked goods and other treats involved.  A friend told me that I would find the nurses so valuable during this process, and she was right.  They are in the trenches with me. 

Another good day all around.

Monday, April 13, 2015

Day 68 - Surgeon

I had an appointment with my surgeon today, and it went quite well.  He originally requested to see me mid-way through my chemo so this was a nice milestone.  I like my surgeon very much, but I was nervous going into the appointment.  I think that my nerves stemmed from the crushing blow that I received in his office on February 3 when he said "I am afraid that you might have cancer."  I called the doctor's office this morning to ask if he would please do an ultrasound while I was there because I wanted to get exact measurements on the tumor as well as have him check out some pain that I have been having under my right arm.  Good news and good news.  There is nothing suspicious under either arm, nothing suspicious on my right side at all actually, and the tumor has gone from 3.5cm (Feb 3) to 1.5cm (today).  That is significant.  Very significant.

I do have cysts on my right side and on my left for that matter, but I've always had those.  Cysts are harmless..just there and sometimes palpable.  The doctor spent a lot of time talking to me and asking how I was doing, and we also talked about surgical options for quite a while.  The final decision there is ultimately mine, but I think that both my oncologist and surgeon lean toward lumpectomy.  Here are the options:
  1. Lumpectomy followed by radiation
  2. Bilateral mastectomy with no radiation
If I have a mastectomy, I will only have radiation if there is lymph node involvement, which seems unlikely based on everything that we know right now.   If I have a lumpectomy, I will absolutely have radiation on the surgical area as well as under my arm.  My oncologist told me that he's read some studies that radiation is good for TNBC so I think that it is something that I want.  I am not afraid of radiation though I know that there are potential risks and side effects.

My surgeon recommended making an appointment to meet with a radiation oncologist to learn more about radiation and to help me make a decision.  I like that idea and will look forward to setting up that appointment. The more information, the better for me. 

At one point during my appointment, the doctor was asking me about the side effects from chemo so I went through the whole list.  When I told him that I always feel better before my next treatment, he laughed and said "that's when you know it is time for more chemo."  So true.  They build you up and knock you back down.

Today was a very good day.  Very good.  I keep getting positive and encouraging news, and it really does help me maintain a mostly positive outlook.  I also felt pretty well all day today and was able to get a ton accomplished at work.  My extreme tiredness seems to be waning a bit too.  Last night, I was so tired that I passed on a piece of chocolate cake.  Please let that sink in - I chose sleep over cake.

Sunday, April 12, 2015

Day 67 - A Dream

It's rare that I remember my dreams though I know that I dream vividly.  I will often wake up and remember snippets of dreams, and those brief memories fade quickly. A part of last night's dream is lodged in my mind though.  I dreamt that a doctor, in the distant future, told me that the results of my CT scan were clear. It's quite a dream, and one that I will keep with me for a very long time, much like the image of my rainbow.

I've had a few other dreams that have been realized. The night before we went in for an ultrasound to find out if we were having a boy or a girl, I dreamed that I was with a little boy at a football game.  That day, we learned that we were expecting a little boy.  Funny how certain dreams stand out when memories of most of them are very fleeting.

I am not going to go so far as to say that dreams can predict the future, but I do believe that there is something behind such messages from my subconscious.  If you don't, please don't spoil it for me.

Very nice day today.  We had brunch plans with some friends that fell through so the three of us ended up going out anyway. We were already dressed and had a gift certificate to a place right around the corner so why the heck not? It was nice to be out.

There was another woman without hair at brunch.  She had a hat on, but we all know that hats don't really hide anything.  I tried to catch her eye to offer a small smile, but she did not look in my direction.  That's ok.  Sometimes people don't want to connect, even on small levels. She had to have seen me though. It was a small restaurant, and I had nothing on my head.

After brunch, I took a 2-hour nap which was lovely.  I should have done some work during that time, but I really needed a bit more sleep so sleep it was. I still should do some work today, but I am also enjoying a bit of a lazy Sunday.

I took Henry to a playground after my nap, and he had a great time.  He is quite the climber.  I wore a hat at the playground but took it off for a brief moment at one point.  As soon as I did, A little boy (maybe 7-years old) screamed "OH MY GOSH THAT WOMAN DOES NOT HAVE ANY HAIR.  LOOK AT HER."  Out of the mouths of babes.  That little boy's mom is probably glad that she did not hear that as I am afraid that she would have melted through the bench that she was sitting on.  I am not bothered by such comments at all (especially from a child).  Maybe the boy did tell his mom about me on the drive home and was able to learn something.

Henry, "MOM, you didn't get your hug from me yet this morning."  Such a sweet boy...I love our weekend mornings together.

Saturday, April 11, 2015

Day 66 - Why?

Why?  It's the question that I have asked myself about a million times since February 5, and it is the question that I imagine that everyone who has been in my shoes has asked.  Why is this happening?  Why is it happening to me, why is it happening to anyone?  I will never know the answer to that question nor will anyone else who has asked the same.

Was it something that I did?  Hard to say, but it is unlikely.  Is it something in our environment?  Maybe. Is it the food that we eat?  Could be. Or is it just random?  That is most likely.  It's just random, and it chose me.  I am sure that there is something deep within my biology that made me an easier victim, and maybe I will know for sure one day, but I will probably not.

My having cancer has not just affected me. It's affected everyone who loves me and cares about me.  Our worlds will never be the same, and we will always live in a place that has been punctuated by cancer in one way or another.  It is simply not fair. It is not fair to my child, my husband, my parents, my siblings, my extended family, my friends, and it is certainly not fair to me.

Cancer has robbed me of peace.  It took my very happy and content life, shook it up and turned it upside-down.  Why?  We were navigating life just fine and were thinking about some potential changes for Mike's career.  That all got put on hold on February 5. We went into survival mode, and our entire way of thinking changed.

I remember waking up early on February 5 after a fitful night's sleep to catch an early flight to DC.  The very first thought that I had when I woke up was "I'll find out if I have cancer today."  Heavy.  I dreaded the sound of my phone ringing that day and jumped of my skin when I saw a Charleston area code show up.

Cancer has stolen peace from too many people, and it has stolen the lives of people that I love.  It is just so cruel.  I hate it.  I hate that I have it, and I hate that so many have had it before me.  I hope and pray that I am able to put cancer in my past one fine day and figure out how to find a new sense of peace.  I want that more than I want anything else in the world, and that is why I am throwing everything that I have at cancer now.

Yes, I get tired of feeling like shit from the treatments, but I would do quadruple the amount if that is what it took to get better.  I maintain my declaration that I will do EVERYTHING that I can to fight this.  Everything.  The uncertainty of it all is just so horrible.  I want my peace back, and I hate cancer for taking that from me.

Despite some moments of deep thoughts and uncertainty, today was a wonderful day.  We lounged around the house and played this morning, and some friends came over late afternoon to play and have dinner.  They have two kids - one a few months older than Henry and one who is 18-months old.  It is is so fun to see them all play together. The older two are just adorable. Henry and his buddy have known each other since Henry was born, and it has been so much fun to watch them turn into the kids that they are today.  They play so nicely together, and are just so cute.  I had fun making the baby laugh.  He is super ticklish, and I got some good belly laughs out of him which made me laugh.

Yes, I do wonder why, but I also can't help but think that something great will come of all of this for me.  Whether it is helping others as they navigate these scary waters or using my skills to serve a charity organization, something great will come of this.  I just know it.

Friday, April 10, 2015

Day 65 - Sore

I'm a bit sore from the Neulasta injection that I had on Tuesday.  I don't have any real bone pain (yet and hopefully won't), but I have some muscle aches and pains.  The only thing that I can compare it to is being achy from the flu.  It's not too bad though..just noticeable.  Advil seems to do the trick if I need relief.

My stomach is feeling much better today than it was earlier in the week, but I plan to continue taking my anti-nausea meds through the weekend.  I've made the mistake of stopping them too soon after previous rounds of chemo, and I won't do that again. 

I got a very solid night's sleep last night, and I think that has made a world of difference in how I feel today.  I skipped the steroid yesterday, and that was key.  I'll do the same today in hopes that I can continue to get some good winks.

I took Henry to school this morning, which he and I both love.  He always skips happily into his classroom after giving me lots and lots of hugs and kisses.  He's so sweet. Henry woke up a little bit earlier than usual this morning so he came in bed with us for a few minutes until I was ready to get up.  At one point, he leaned over and rubbed my back and whispered "Mom, I love you."  Isn't that a great way to start the day?  He's such a sweet little boy.

Otherwise, not much to report.  I am looking forward to some nice lazy weekend mornings tomorrow and Sunday.  Those are my favorite.

Thursday, April 9, 2015

Day 64 - Me

I've learned a lot about myself since February 5 (a.k.a. Day 1), and I learn more every single day.  Here are a few things:
  • I am strong.
  • I have never known fear like this.
  • I wish that I could go back to everyone that I know who has ever had cancer and give them a huge hug and spend more time talking to them. A diagnosis of cancer rocks you to the core, and I did not realize the true ramifications of such until now.
  • I didn't know that I could make so many tears.
  • I didn't know that I could find happiness and joy during this process, but I have found it in so many ways.
  • I never knew how much I was loved.  Yes, of course, I know that people love me, but I've never felt it as deeply as I do now.
  • I am learning to put myself first in most instances (with some exceptions) during this process.  That is not easy to do.
  • I will be a better mother and a better wife because of this.
  • I am my own best advocate.
  • AND I AM STRONG.
I've learned a lot more about myself, but those are the main ones I can think of right now.   Along the lines of advocating for myself, and as I've mentioned, I have been talking to my doctor about adding an additional type of chemo to my regimen called Carboplatin.  It's been proven to help increase the chances of a pathological complete response, which is something that I really want to happen. So if I can do something to increase those chances, I really want to.  My oncologist has been concerned about adding it due to toxicity of the carbo BUT called me today with a different message.  He brought up my case to his colleagues during their weekly tumor board meeting, and several of the doctors in the practice encouraged him to add it to my treatment plan.  They said that it is not part of the current standard of care for TNBC but it looks like it will be soon.  How cutting edge of me to be asking for it. The other doctors also told my oncologist that their patients currently receiving carbo are not experiencing terrible side effects so I still hold out hope that I will have an easier time with my next 4 treatments.

So, all of that said, my last 4 chemo infusions will be Taxol and Carboplatin, and the treatment schedule is changing slightly.  I will be getting chemo every 3 weeks vs. every 2 for the last 4 treatments so should finish chemo on June 23 instead of June 2.  The white blood cell recovery time with carbo is a bit longer so my doctor wants more time between treatments.  I am fine with that.  I am thrilled by it actually.  Who knew I could ever be so excited about adding more chemo to my life?! 

I got some other good news from a friend late last night who has been dealing with cancer, surgery and chemo for a very long time.  Her tumor markers (a test that evaluates the presence of cancer) have gone down significantly and are only 3 points away from "normal" (non-cancer) levels.  I am so incredibly happy for her, and I KNOW that the tumor marker number is going to keep going down. The chemo is working, the chemo is working!!

Despite a decent amount of nausea for me, today was a really good day. One of the anti-nausea meds that I have is a steroid, and I think that it is screwing up my sleep.  I was tossing and turning a lot last night, and I think that it is from the steroid.  I am going to try to go without tonight and see if I can get some better sleep.

Oh and P.S. - I am strong.

Wednesday, April 8, 2015

Day 63 - Barfy is the New Black

I can take zero credit for this post title.  My friend and inventor of the word "barfy" suggested it, and I love it.  I've just been waiting for the right day, and unfortunately, today is that day.  My stomach is really churning today.  While it is something that I have come to expect in the days after these treatments, it is always unwelcome and uncomfortable.  I am able to eat and keep food down, which is good.  There has been no actual barfing..just nausea.  I've been staying on top of all of my nausea meds, and I do think that they help.  I cannot cannot imagine what it would be like with out them.

One of my anti-nausea meds is a steroid that I don't love taking.  I think that it is making my weight creep back up a little bit, and I don't like that.  But it does seem to help my stomach, and I know that I should not be concerned about my weight right now.  I don't want to be overweight and bald though (yes, I just said that).  Vanity can still play somewhat of a role during cancer, right?

My food tastes are so funny these days.  On super barfy days, I really just eat whatever sounds good, and desires vary widely on any given day.  I've craved beans (black beans, refried beans, white beans, kidney beans...I sound like Forrest Gump right now), grits, bread, lemon ice, soup (lots and lots of soup), potatoes, smoothies.  The list probably goes on, but those are top of mind right now.  The beans thing is pretty funny, but not a bad craving to have.  Probably one of the healthier ones that I have these days.  I must need the vitamins and maybe the fiber.  Soup and smoothies are on the healthier side of things too..at least I can sneak some veggies into both. I eat like a real human on non-barfy days.

One of my favorite recipes (it's been a favorite for years) is one that my uncle made for me a long time ago.  It is white pasta with white beans.  Basically penne pasta, white beans, garlic, crushed red pepper, and cheese.  I suppose that the cheese could be optional, but why should it be? To me, that dish is the ultimate comfort food.  It's just so good.  I think that I have made it at least 3 times since my diagnosis, and Mike does not like it so a recipe lasts me for several days.  Bonus.

Anyway, for someone who is barfy, that is a lot of talk about food.  My food intake is a bit nuts these days so why not talk about it. I have talked about almost everything else on this blog.

I took a quick trip to the doctor's office for my Neulasta shot and will be doctor-free until Monday of next week.  The Neulasta shot makes my face turn bright red for a day or two after I get it.  It's kind of strange, but I guess it is a side-effect of the Neulasta trying to re-build blood cells.  Who knows.

The nurse who administered my chemo yesterday asked me if I was also a nurse. I guess my knowledge of cancer-related medical jargon makes me seem like I have actual experience in the medical field.  Thank you, internet.

I managed a slow walk around the block during a break from work today, and it felt good to get some mild exercise and fresh air.  I walk daily if I can, and I know that it helps me to step away from my computer for several minutes at a time.  

A blog reader and someone with much chemo experience said that she used to call chemo "drano" because of its toxicity, but a friend of her suggested that she change her mindset and call it "healing juice."  I like that very much and will happily use it. So much of this is mental.

Tuesday, April 7, 2015

Day 62 - Round 4

Chemo part 4 is in the books!  I am officially at the halfway mark, and it feels good.  As the nurse was administering the last syringe of adriamycin (a.k.a. the red devil), I couldn't help but be relieved.  That stuff is so vile.  It is bright red and has blessed me with much nausea over the past two months.  I took a picture of the syringe for the heck of it and so that I can show people how red it is, and will happily NEVER SEE THAT STUFF AGAIN.

Now, don't get me wrong, the adriamycin and cytoxan have done wonderful things for me.  Wonderful.  The tumor is so small that he doctor could not even feel it while I was lying down. I had to sit up for them to measure it.  It is really excellent news.  I doubt that we'll be able to feel it at all at the next appointment.  I am so thankful that the tumor is responding so well to this gross chemo.  Makes all of the barfiness worthwhile.

I had a lot to discuss with my doctor today, and he is always very willing to answer my questions and address my concerns.  I told him that I worry that we are not doing enough to fight this, and he kind of smiled at me and said "you are on a high dose of the strongest chemo that is out there.  There is nothing stronger and more aggressive." (If anyone reading this knows otherwise, please keep don't tell me)  That made me feel better.  It's a bit odd what makes me feel better these days.  He also said that we could discuss post-surgery chemo if I do not get a PCR.  He said that doing that would be unconventional, but we can talk about it.  Again, good.  I have one opportunity to beat this the first time, and I would like for it to be the only time as well so I am doing everything in my power. 

I also brought up a phase 2 clinical trial that I found that is based in Michigan.  It is for patients who are post-chemo but pre-surgery, and the trial uses the patient's own t-cells to fight the cancer and help improve the chances of a PCR.  My doctor is reviewing the information, but he (and I) has concerns about anything that would delay surgery, and this would. I lean that way too.  Surgery is what is going to truly get this out of me so delaying it makes me uneasy (to say the least). I am going to look for the phase 1 data from that particular trial, but it is unlikely that I will do anything more (please don't worry...I am thinking of myself first in this instance).  I will continue to hold out hope that the TNBC vaccine trial will open with the Mayo Clinic sometime late this year or early next.  That is something that would be done totally after all treatment and would not interfere with anything that I am doing.  Seems safer all around, but I will browse www.clinicaltrials.gov pretty regularly to see what else is going on.   Never though I would type that sentence... my nerd is really showing.

I have to keep reminding myself that my current treatment plan is proven to work.  That is why they do it!  Many many people have gone down this road before me and have had my same treatment.  I am not charting new territory here, thank God.  My doctor does not have me on chemo to try something new.  He has me on chemo because that is what is going to make me better.  I keep thinking "do more," but I am already doing a hell of a lot. While it is important to remain vigilant and continue to advocate on my behalf which  I will absolutely keep doing. I do need to also trust the proven process a wee bit more.  Note to self: simmer down.

I took a hat with me to my appointment this morning but didn't wear it all that much.  I walked into the office without my hat on, checked in and sat down next to a very sweet older woman.  She looked at me and said "you are so brave, I can't go without my wig."  It was nice of her to say that, but I don't think that taking off my hat makes me brave.  I was just trying to be comfortable and avoid a headache. Plus, I really don't mind how I look right now.  I still give myself a second glance when I pass a mirror, but I am ok with it.  It is certainly not something that I feel compelled to cover up all of the time, and let's be honest, I am not fooling anyone when I wear a hat.  You can tell that I don't have hair. I still wear a hat or scarf often (daily) but am just as comfortable without too. My hat collection is fabulous, and I love all of the options that I have.

I wore a John Deere hat when I had one on today. Last fall, my organization put on an event with John Deere at a farm in rural Maryland to demonstrate JD's wireless technology on all of their farm equipment.  It's pretty interesting nerd stuff.  JD gave all event attendees a hat, and I was able to snag one so it was an early add to the hat collection. 

Today was a great day, and I will maintain that no matter how barfy I may get over these next few days.  The chemo is working, and that is THE most important thing right now (well as it relates to cancer).  The chemo is working. The chemo is working, and I probably need to chill just a touch...

Monday, April 6, 2015

Day 61 - Brace

As I brace myself for tomorrow's appointment and subsequent treatment, I can't help but be excited about reaching the half-way point in my chemo treatment.  A month and a half ago, that milestone seemed to be an eternity away, and I will reach it at around 1pm tomorrow (depending on how far behind things run in the morning).  I will be very happy to put the AC chemo behind me even though things have responded very well to the treatment.  I can't complain too much about it because it is killing the cancer in my body, but some gripes about the side effects are to be expected.  I am only human.

It's kind of funny.  I go into these appointments full of energy and borderline excited to see how much progress I've made since the last appointment.  I am usually full of smiles and jokes (some of that is from nervous energy). Maybe that is strange. Maybe I should tone it down a little bit, but I'm not a very toned down person. Once I leave each time, the reality of what I will be facing over the next several days usually hits, and it knocks me down a few pegs (a few..not a ton).

I have a very long list of questions for my doctor tomorrow.  Poor guy..maybe I should book a double appointment with him each time.  One of the many things that I like about my doctor is that he is very patient and always willing to discuss any questions or concerns with me at any time.  It is probably why he is always running behind.  I imagine that he is like that with all of his patients, and I can wait if it means that someone else is getting the care and attention that he or she needs. I also like that he has a sense of humor and is not afraid to make fun of my neuroses a little bit.  It makes me laugh, and I don't know many that are able to laugh while seeing an oncologist.  Those two don't seem to mix a lot of times, but I am glad that they do for me.

I felt very well today and got a ton done at work.  This next week/week and a half is going to be crucial for my upcoming event, and there is much to be done.  I know that I will be doing a lot of it under the cloud of chemo later this week, but that is ok.  I've worked hard after previous treatments and will do so after this one.  I will say that after the April event is over, I will likely take a few more sick hours that I have been surrounding each chemo session.  I may not have a choice, actually, because I may be asleep during the last 4 chemos due to the IV bag of Benadryl that I am slated to get before each treatment.  Goodness.  Benadryl. 

Henry and I snuggled and played after Mike picked him up from school tonight, and I went to the gym for an 8pm class.  I like going on the nights before chemo because I feel well, and it helps me get out some nervous energy before my treatment.  I worked out hard, and it felt very good even though I got pretty winded at some points.  I hope that I can go more regularly as I progress to the next type of chemo.

It was a good day, and I am as ready as I can be for tomorrow.

Sunday, April 5, 2015

Day 60 - Mentally

I am in a pretty good place mentally right now.  I have found that my mental state seems to directly correlate with my physical state, and that makes sense.  It's hard to be very positive when I feel awful.  I've been doing a few things to continue to help myself mentally and emotionally.  I found a local group of BC survivors though the Young Survival Coalition.  They get together in-person for dinner once a month and have a moderately active Facebook group. Their next dinner is on April 28, and I am going to try to join...no reason why I should not be able to make it.  I think that it will be very helpful for me to be around others who can directly relate to my experience.  It appears as though most members of the group are post-treatment as well which will be even better for me. They've been in my shoes and can absolutely relate to me.

The other thing that I am going to do is take advantage of the Young Survival Coalition's one-on-one peer support program.  They will link me up with someone who is post-TNBC treatment, and I think that will also be very helpful.  I have a "coach" through my hospital who is very nice, but she is quite a bit older (mid-60s) than me so I don't relate to her as well as I think I would someone who is closer to my age.  She is getting ready to celebrate 5 years of NED (no evidence of disease), which is a big big deal so I am sure that she will have lots of upcoming celebrations.  I am very glad to know her and so happy for her NED status.

There are many programs available to me and to others in similar shoes, and I am glad that I have found them. I have never had a reason to need support groups or the like until now, but I sure am glad that they exist.  Having cancer is a life-changing, world-altering, mind-blowing thing, and I am so grateful that it is not something that I have to face alone.  Between the wonderful support of my team and other resources that I have found, my new world is not quite as scary. I will continue to utilize all that is available to me for help coping now and then moving on as best as I can after treatment.

The acronym "NED" is on that I see on message boards and forums a lot, and it's one that I look forward to hearing in relation to me one day.  Doctors will never tell someone that she is "cured" or "does not have cancer anymore."  They will say that there is no evidence of disease or that someone is in remission.  It's just how it is, and I imagine that hearing the words that there is "no evidence of disease" are about some of the sweetest that someone with cancer can hear.

Today was a great one. My mom and Glen came over for brunch before they left town, and we otherwise spent a lot of time outside playing.  It was a gorgeous day, and it was nice to be able to take advantage of the wonderful weather.  The Easter Bunny stopped by to see Henry as well, and he was very excited.

Happy Easter to all!  

Saturday, April 4, 2015

Day 59 - Henry

I took Henry to get a haircut this morning at a place near our house.  I sat somewhat close to him while he was getting the cut but far enough away that I could just sit back and watch his interactions with the stylist.  The two of them had a nice chat about their favorite wild animals, pets, Easter, and favorite toys.  I overheard Henry telling the woman that we have one dog named J(essup) and our other dog Max is an angel now, that we don't have cats because I am allergic, and that Henry likes all animals but giraffes are "actually" his favorite.  The woman cutting his hair was utterly delighted by Henry, and I loved just watching his interactions with her and hearing what came out of his mouth.  It was really cute.

Post hair cut, he and I went to the grocery store to stock up for the week.  Henry's three-year old was really showing, and we had to have a few unpleasant chats in the store and in the car after.  We are working on him listening the first time.  It's hard for an energetic three-year old, but it is important to me.  He cried for a few, and we had a bit of a heart-to-heart on the drive home.  When I encouraged him to apologize to me, he said "those words can't come out of my mouth." Ok that was pretty cute in a bit of a pitiful way.

Late afternoon, we went out to Kiawah to spend the afternoon with my mom and Glen.  We mainly hung around and chatted, but Henry, my mom and I ventured out for a bike ride at one point.  I got ahead of them at one point and over heard Henry say "Nana, I have to go catch up with my best friend, Mom."  My best friend, Mom.  Now that makes up for previously mentioned infractions, and my heart melted when I heard him say that.  Adorable. We rode for nearly 2 miles, which is a lot for a small person.  He did a great job though, and it was fun to go for a little ride.

And finally, I finagled some rocking chair/snuggle time after we read books tonight.  It was the perfect way to end a fun day with my little guy.

Friday, April 3, 2015

Day 58 - Dome

After we went out to dinner last night, we made a quick stop at the grocery store for a few essentials. When we were driving there, I asked Mike if he would be embarrassed if I went into the store without the scarf on my head that I had been wearing all night.  It was giving me a headache.  Of course he said that he would not be (and I knew that he would say that..just needed some reassurance) so in I went with my bald dome on full display.  It was, again, very uneventful, and I am glad that I did it.  I was not uncomfortable doing so, and that was the most important thing.  I mean, we've all seen a bald head before, more often on a man than woman, but it's not terribly uncommon.

There's no real point in that story other than to say that I am embracing this part of my journey more than I thought I would.

My throat is about 90% better, thank goodness, and I am feeling great.  The fact that I feel so much better toward the end of each chemo cycle really does help me mentally get prepared for the next round. I know that I will eventually feel better no matter what side effects are thrown my way.  It helps so much.  I am also interested to see what the old tape measure says next week.  The tumor has gotten so small that I bet that I will not be able to feel it after the next round or two.  Go away!!

Henry and I walked the dog after work tonight, and that is always an adventure. He likes to hold the leash so the poor dog is always confused by his zigging and zagging and stopping and going.  She's a trooper, though, and is just happy to have the walks and attention.  It was a gorgeous day here and I enjoyed the fresh air and light exercise.

My work event is in 3 weeks so things have been nutty at work.  We're in great shape, and next week will really be a big logistical wrap up week.  I am looking forward to hearing about how it all comes together and hope that I don't annoy people too much by asking for updates while they are there.

I am looking forward to the weekend and to spending some time with my boys, my mom and Glen.

Thursday, April 2, 2015

Day 57 - Date

My mom and Glen are down here at Kiawah for my mom's spring break, and they agreed to host our smallest person for the night.  Mike and I took advantage of the free babysitting and went out to dinner.  Comp babysitting and a restaurant gift card = excellent date night.  It was nice to go out for a little while, and I appreciated the change of pace and scenery.  In general, when we go out, we meet up with friends who we don't get to see often, but it was nice to have some time together tonight.  

Henry eats up the attention from his grandparents and other family members so there is no doubt that he was in heaven. He was a bit sad that Mike and I were not coming with him to the beach, but I have a feeling that he got over that pretty much instantly. We're pretty attached to the little person, but some time away is good for everyone sometimes. Some proof that he's having a blast (and man, he needs a hair cut):


Today was, otherwise, pretty uneventful.  I continue to comb the depths of the internet for more useful information on triple negative breast cancer supplemental treatment, research, and scientific discussions.  It seems as though more and more information is becoming available, but there is still not enough.  I am registered for 2 webinars slated for later this month and am working on next week's list of questions for my doctor.  I know that it is not much, but I need to feel like I am doing more...like I am doing everything that I can.  And I truly am.  I am doing everything that I can.

One thing that has become a moderate obsession is something called pathological complete response (PCR).  A pathological complete response occurs when neoadjuvant (pre-surgery) chemo wipes out all traces of cancer in the body.  This is something that we will find out post-surgery, after a pathologist has reviewed excised tissue and lymph nodes.  A PCR would be a very very good thing and is something that does happen fairly often...something that I want very badly.  I actually asked my oncologist about adding a third type of chemo to the mix in order to increase the possibility of getting a PCR. He was resistant to adding the particular chemo that I brought up due to reported side effects, but I am going to ask him again next week. I am also going to ask my surgeon to do an ultrasound when I see him on April 13 (he's got a machine in his office and is always happy to fire it up for me) to see how things look.

I know, what kind of crazy person asks for more chemo?  Well, one who wants the best possible chance to improve her overall prognosis. I am also going to ask about the potential of adjuvant (post-surgery) chemo if I do not get a PCR.  I like to know all of my options and create new ones if necessary.

Someone was asking me today where I was leaning surgery-wise, and when I told her that I didn't know yet, she said "well if you have a mastectomy, you can never have breast cancer again, right?"  I think that line of thinking is common - chop them off, and you're good.  Unfortunately, that is not the case with breast or many other types of cancer.  Breast cancer can show up in many areas of the body, and it's not good if it does.

A lot of my internet research, as of late, has been reading survivor stories.  I kind of have to dig to find them because people who are several years out from diagnosis have moved on.  They are not participating in forum discussions or posting in Facebook groups.  They have put cancer in the past and are living their lives.  I love that and love happening upon their stories even more. That whole "hope" word really kicks in.

Wednesday, April 1, 2015

Day 56 - The Emperor

PBS has been running a series called Cancer: The Emperor of all Maladies.  Part 2 was last night, and I was able to stay awake for a decent amount of it and recorded the rest.  Last night's episode had a significant focus on breast cancer which was, of course, riveting to me.  One part of the show followed the story of a surgical oncologist at Howard University who was diagnosed with breast cancer of her own.  She had triple negative in one breast and Her2+ breast cancer in another which is an extremely rare diagnosis, and viewers were able to follow her through chemo and a bilateral mastectomy.  Despite a scary diagnosis and prognosis, the show ended with her doing well after having a tremendous response to chemo.  One tumor was totally gone at surgery, and the other was only 3mm large.  Such great news. She is also young, a mom, a wife, career driven and very brave.  I can relate to her on so many levels.  I saw the pain and the fear on her face during her interviews. I know that pain and fear...there are too many of us that do.

The series is fascinating in that it covers many different types of cancer and talks about the history and the future of treatment.  Some parts are very hard to watch, but I recommend it overall. 

Today was a better day.  My throat is still fairly painful, but between the magic mouthwash and another prescription that the on-call oncologist called in for me last night (first after-hours call..could not deal), I am confident that it is on the mend. 

A few months ago, when Mike and I went to the cancer center for "chemo education" with a nurse, she went through a litany of potential side effects from chemo but said "you are likely to experience very few of these."  Oh Nurse Heather, you jinxed me.  I've experienced my fair share of side effects, and continue to be frustrated by that, but this is temporary.  It is important that I keep reminding myself of that because the mental part of dealing with chemo is just as important, if not more so, than the physical.

People have remarked that they are impressed by my positive attitude (not tooting my own horn here), and I appreciate those remarks.  My being (mostly) positive is something that I work hard on because I refuse to give cancer more than it has already taken from me.  It has robbed me of many things and has made more more fearful than I ever have been, but I will not give it more.  Yes, I have my days and have cried many tears over this, but this is the hand that I have been dealt for whatever reason so I am playing my cards and living my life as best I can despite some current challenges.  Anyone else would do the same...that is not unique to me.

Mike and I walked the dog at lunch today, and while we were out, I looked at him and said "I'd like for you to shave my head when we get back."  Just like that.  I've had several friends offer to come over and do that for me, but I made a spur-of-the-moment decision and wanted it done right away.  Mike was happy to oblige, and I actually look better without hair at this point.  It was so patchy and gross on the top that it made me look more sick to have patchy hair than not.  We joked about needing to revise our marriage vows to include head shaving as necessary. Our neighbors saw me brushing off my head in the front yard and came out to say hi and cheer us on. It was a happy occasion, and no tears were shed.  Also, turns out that I have a very nicely-shaped head, but it is super super white.  If you ever seen a PGA golfer (lots of golf in this house) take off his hat, you'll see a bright white line on his forehead that marks the protection from his hat. (meanwhile, I always worry that those guy don't use enough sunscreen)  That is what I look like right now so I think that I'll try to get 2-3 minutes of sun on my noggin every day to get a tiny tiny bit of color.  Who knew that I would worry about having a little bit of tan on my head?!  Funny thing to think about.

When Henry saw my head, he smiled and said "mom, where did your hair go?"  I reminded him that the medicine that I am taking is making my hair fall out.  I let him rub the stubble on my head to feel how scratchy it is, we made a few jokes, and then he went to play.  Pretty much perfect.

In closing (long post), I am glad that 2015 Q1 is behind us.  It was not terribly kind to our family (though some good things did happen), and I am glad that these past three months are a thing of the past.