Tuesday, March 31, 2015

Day 55 - Ouch

As I've said on this blog (and it is a medical fact), chemo attacks fast-growing cells in the body.  It cannot tell the difference between cancer cells and normal healthy cells, which is why the side effects of chemo can be so harsh.  Apparently, chemo has decided to take a stab at the fast-growing cells in my throat because it HURTS.  It feels like I am swallowing razors.  My throat started getting sore a few days ago and really took on a life of its own last night.  I put in a call to my doctor's office yesterday morning, and they are trying to find a pharmacy to compound "magic mouthwash" for me but said that I won't be able to get it until Wednesday.  I'm going to try to fast-track that today (writing this before work at 8am) as soon as my doctor's office opens.  I can't have another sleepless night like I did last night.

Apparently "magic mouthwash" is a concoction that helps numb, heal and soothe throat and mouth sores caused by chemo.  Sounds fishy, but I'll try it if it really is magical.  I also started to feel some of the knee pain that I had last chemo cycle around 3:00 this morning.  A healthy dose of Motrin helped both the knee pain and the throat pain actually so I was able to catch a few winks. I had to really work hard to get up the nerve to take the Motrin, and I am glad that I did it.  Nothing like swallowing a handful of pills (ok it was only 3) with a really sore throat.

After nights like last, I really have to dig deep to remain positive and to be able to function like a semi-normal human.  I gave myself many pep talks during the day today "I am strong, I am strong, I am strong, I am strong, I am ok, I am ok, I am ok."  This was me at certain points:


At other points today, I cried and felt sorry for myself.

Anyway, last night was another chapter in my current book entitled Nancy is a Hot Mess.  It's going to be a brief book when all is said and done, but man I wish that I could stop making entries into that one.  A friend who has her own cancer story recently said to me, "cancer is a total bitch."  It really is.

Mike was able to obtain the mythical "magic mouthwash" for me at around 2pm, and I took some right away.  It numbed my mouth and throat and provided almost instant relief.  These doctors and pharmacists really know what they are doing sometimes, huh?  I will happily add that to my arsenal of potions. It also contains Benadryl so that should help me sleep better tonight.  Bring it on.

Monday, March 30, 2015

Day 54 - Hope

"Hope" is a nice word.  It is the desire for a certain thing to happen, and I use it often.  "I hope that you have a nice weekend."  "I hope that you have a nice day."  Hope.  The word changes after a cancer diagnosis.  In some ways, it is still a wonderful word, but in other ways, it is a frustrating word.

For example, if I were to say "I hope that my cancer does not come back one day," it kind of changes how one might view the word "hope."  In this circumstance, the word "hope" becomes so passive and not such a nice word.  Is that really all that I will have after treatment is over?  Hope.  I know that I am ahead of myself in this thinking.  I still have many months of treatment left, and I am responding very well to treatment which is a great thing and does give me a lot of hope.

I also hope that the fear of recurrence does not play too much of a role in my life after treatment.  I spoke with a 15-year TNBC survivor about a month ago to whom I am very distantly related via marriage.  She was very open and honest with me, and it was refreshing to hear about her experience.  She openly admitted that she lost many years post-treatment to fear, and I can understand that.  She said that people expect you to be jubilant after treatment is over but that is often not the case.  During treatment, you are actively doing something.  You are fighting this horrible cancer.  After, though, you are just hoping.  Hope is scary in this instance.

I am already planning to seek out some counseling at some point in my journey.  I am not sure if I want to add, yet another, appointment to my long list of doctor's visits, but it will need to happen.  I think that counseling is a very good thing and can really help people cope with all kinds of things that life throws our way.  I will need to work through my fear and figure out ways to handle it and not let it totally cloud my life.  I owe that to myself and to my family. 

Anyway, I don't want to get too dark or deep here, but these are things that I think about.  How could I not, right?  Pre-cancer, I would have never given such a second thought, but as I've said many times, cancer has changed me. 

There was a segment on 60 Minutes last night about using immunotheraphy to combat cancer, and it left me excited about the future of cancer treatment.  Researchers at Duke University are using a modified polio virus to combat glioblastoma (much like part of the Vice documentary that I posted about fairly recently).  It is absolutely fascinating medical technology, and something that I hope (there is that word again) continues to do well in clinical trials and is made available to more patients soon.  This technology and cutting-edge research does offer hope to those who, at one point, had none.

This post is a bit rambly,  but it is where my thoughts are right now.  I have so many mixed emotions about the word "hope."

Sunday, March 29, 2015

Day 53 - Sleep

I slept so well last night that I almost bounced out of bed when I heard Henry a few minutes before 7am.  What a nice feeling!  I have not been awake for hours on end during the night recently, but I also have not slept for a solid night in a while.  I am having some issues with temperature regulation (thank you Lupron) so alternate between being too warm and being too cold during the night.   Last night was better though, and I had more energy this morning.  Amazing what some good solid z's can do for a person. I also went to bed at 9:30 last night so that surely helped.  Wild Saturday for me.

We had another lazy weekend morning this morning.  Henry and I logged some nice couch time before the rest of the house woke up, and I made a nice breakfast for everyone.  I am afraid that I may have eaten too much of said nice breakfast because my stomach was just not right at all after that for most of the rest of the day.  I also backed off on my nausea meds starting yesterday which was probably not wise.

I stayed put at home for most to the day today while Mike, Henry and Ryan went out for mini golf and go carts. I wanted to go and was sad that I didn't, but it was better for me to just rest for a little while and take it easy.  That is what my body needed so I am glad that I did it.

I almost shaved my head yesterday when my friend was over, but I still couldn't do it.  I don't know what I am holding onto here, but maybe I'll just let the rest of my hair fall out on its own as it has so far.  It still looks like I have some hair when wearing a hat or scarf, which is why I don't want to let the sides and back go completely.  The top of my head is a disaster though.  It is wispy, patchy and funny looking.  I just laugh about it at this point.  I've never cared so much and so little about my hair all at the same time.  I don't really care how to looks because I know that it is just hair and will come back in time, but I seem to talk about it a lot.

I think that the reason that I focus on it so much is because it is the most visible part of my experience.  No one would know what I was going through if my hair was fully in tact, and I am not terribly interested in opening myself up to strangers who may or may not feel compelled to talk to me about cancer.  I am likely over-thinking this whole thing as most people rarely give others a second glance, but who knows.  All I can really compare it to, at this point, is being pregnant.  When that belly starts to show, it seems as though one becomes fair game for mostly well-meaning but regular commentary from others.

Enough about my physical appearance.  Today was a fine day despite my disappointment over not being able to do more.  Rest and healing are important right now though so I am trying to be kind to myself.

Saturday, March 28, 2015

Day 52 - A Great Saturday

Today was so nice.  Henry woke up a little bit before 7, and he and I hunkered down on the couch as we tend to do on weekend mornings and were just lazy for a little while.  I love lazy weekend mornings.  After we dusted off the cobwebs, we went downtown for an early brunch and to meet Ryan after his race, and it was nice to get out for a little while.

This afternoon, one of my best friends came over to just chat and visit for a little while.  It was so great to see her, and it was nice to catch up.  Henry, Mike and Ryan were playing outside for most of that time so we could really talk for a while.

Otherwise, there is not much to report around here.  It was a blissfully uneventful day.  I feel pretty well despite some lingering nausea that is not too horrible. Just noticeable from time to time.  I only took my anti-nausea meds once today so things are looking up.  I am always happy when I can cycle off of that stuff.  It makes me tired and a bit cloudy feeling.

Keeping this short as I am on Henry bath and bed duty tonight. I am glad that I feel up for doing it..so very normal.  

Friday, March 27, 2015

Day 51 - Mayo

No, not the condiment.  The clinic.  I got a call from the Mayo Clinic clinical trial coordinator today, and my name is officially in the hat for the TNBC clinical trial vaccine that I have previously mentioned.  Of course, the coordinator had absolutely no other information on when the trial will open, exactly how to qualify, etc. But she did say that they are working on finalizing funding and are also hoping to present data from phase 1 of this trial at the end of May.  The trial will be for early stage TNBC cases (me) who have completed traditional treatment (will be me), but she did mention that there will be some rules on timing from treatment completion to starting the trial. She was unsure of the timing. I also am still not sure about the folate alpha receptor protein and how/when I will need to test for that, but she said that I did not need to do anything further at this point. The coordinator was also unsure if the trial would be a double blind (some participants get the medicine and some get a placebo) study, which would be important to know.

Anyway, a lot of "I don't knows" came from the call, but I am glad that I got the call and am on the list for further consideration.  Makes me feel like I am doing as much as I can at this point to ensure long-term treatment success for me and for others.  This could end up being a really amazing treatment, and I am happy to lend a hand (or a whole body) if I can.

The nausea remained at a firm "medium" during the day today.  It was not too horrible but not too great at the same time.  I am eating as normally as possible and am got some very moderate exercise today too.  Both help a lot I think.

My brother-in-law, Ryan, arrived today for the weekend, and I am SO glad that he is here.  He is the first family member that I saw on Day 1 and has been by my side (as have so so many others) for the past 50 days.  He's here to see us and do a really great 10K race in town.  I was hoping to do the race with him (even if just walking), but there is no way that I can do it.  If it was next weekend, I would walk, but not this.  We'll plan to meet him after and grab some brunch.

Henry continues to be amazing.  He is very happy to snuggle with me on the couch after he gets home from school which is wonderful.  He is also very funny and entertaining.  This morning, he told me that he wanted to keep his hair even though I was losing mine.  Not a problem, bud.  You can keep your shaggy blonde locks that desperately need to be trimmed.  

A neighbor, who is going through his own battle with cancer, dropped off some hair clippers for me today in case I want to use them.  He saw my patchy noggin yesterday so wanted me to have the clippers just in case.  I may use them.  There is only so much lint rolling of my own hair that can happen on a daily basis. 

Thursday, March 26, 2015

Day 50 - Day 50

It is hard for me to believe that I am on Day 50 of this journey.  On one hand, it seems like this has been going on forever, and on the other, it seems like Day 1 was just yesterday.  Time has been strange to me lately. It is going by so fast and so slowly at the same time.  I am not one to wish away time, at all, but I am very glad that things seem to be speeding along during chemo...at times at least.

I felt pretty good today all things considered.  The nurse who administered my chemo on Tuesday gave me some great recommendations on spacing out my anti-nausea meds.  I was taking all 3 at one time (at least in the mornings), and she suggested that doing so may have been causing more barfiness than less.  The spacing does seem to be helping.  The nausea is present but not nearly as bad as last time.

Mike and I took the dog for a walk around the block around noon, and it was really nice to get outside and get some exercise though it was very mild and easy.  It is nice and warm here in Charleston which certainly helps lift my spirits.  

My heart is very heavy for the victims of the Germanwings plane crash.  It is such a senseless tragedy, and the report that the crash was likely intentional is absolutely stunning. I hope that the victims' families are able to find peace and comfort in the coming years, but I don't know how that is possible at this time.  Very sad and very shocking.

Otherwise, there is not too much to report from me today.  I am planning on my usual 8 or 9pm bedtime tonight.  I have so many TV shows that I would like to watch but can't seem to stay awake long enough to do so. Oh well. Maybe I'll just save them up for post-surgery days off. 

Wednesday, March 25, 2015

Day 49 - Vacation

I recently announced to Mike that the three of us going to take a major vacation late this year after my treatment is over.  I didn't say "what do you think about taking a vacation?"  I said "we are taking a vacation!"  I feel pretty strongly about this.  I want to go somewhere warm and tropical that is easy to get to and is kid-friendly.  I'd also like to go somewhere on Southwest Airlines.  We have about 50K SW points and will have more soon since we put everything, including my medical bills on our airline CC.  I mean, we may as well get some perks from the medical expenses.  SW now flies to certain places in the Caribbean and Mexico so we'll probably go that route. Time to get Henry a passport.

We'll all deserve a vacation after this, and I am looking forward to exploring options and planning something fun.   I'll try to find something for late November/early December so that I can be confident that treatment will be over.  I should know more about the surgical and radiation parts of my treatment fairly soon.

I have an appointment with my surgeon on April 13.  He wanted to see me when I was halfway through chemo (that is SO soon) so that he can do an ultrasound and talk about potential surgical options.  I'll have a lot of question for him, which is understandable, and will be curious to see if the recommendation is lumpectomy or bilateral mastectomy.  I have a feeling that the recommendation will be the former, but I want to make sure that we discuss the latter in great detail. Don't get me wrong, I am ALL for less-invasive and easier surgery, but I will be fine with the harder surgery if that is what I need to do to get better.  Will be an interesting appointment for sure.

My barfiness was not too terrible today.  Present but not debilitating.  I usually feel pretty well in the morning, and the barfiness increases as the day wears on.  That is probably from a combination of being tired and having looked at a computer screen all day. I was also very tired today.  Slept until 8am and will probably go to bed at 8 or 9pm tonight.  My body is doing some pretty intense work right now so sleepiness is also understandable.

My aunt said to me the other day "Everything was so surreal on that first day.  We kept thinking that you would call back and say that the doctor mixed up your test results."  I kept waiting for that call too to be honest.  It never came. There was no mix up, unfortunately.  I still have plenty of "is this really happening" moments, but they are fewer and further between as the days wear on.  It is happening, and I am doing my best to handle it with grace.  I will get through this.

Tuesday, March 24, 2015

Day 48 - Round 3

My third chemo is history!  One more AC to go then I  move on to Taxol, which everyone says is much kinder to the system..the digestive system at least.  I look forward to that.

My oncologist appointment went very well today.  Very well.  The tumor continues to shrink and respond very well to the chemo, which is extremely positive news.  The measurements came in smaller, and we all agree that the volume has reduced significantly too. This news certainly makes sitting in that chair for chemo much much easier to manage.

We spent some time talking about side effects from chemo this morning  (I seem to be experiencing most of them where some people experience few), and the doctor didn't say that he wanted to consider reducing my dose because I preempted him and said "I have two more AC and just want to power through."  He looked relieved and said that he didn't want to reduce my dose anyway.  If it's working, I am not changing a thing.  Barfiness be damned. 

I know that I have said this before, but I really like my doctor a lot.  He's very approachable, extremely smart, experienced, and very caring.  All good things for someone who is working with me to make some pretty major life decisions.  Of course, I went in with a list of questions and some reading material for the doctor.  When I asked him if I was his most annoying patient, he laughed and said that he likes patients who collaborate with him and want to discuss things vs. just blindly following his advice.  I like that he likes that. 

I've been documenting my chemo infusions via photograph, which may sound weird, but I feel like they should be documented.  I want people to know that I am ok and, more importantly, still me.  Still smiling, still being a mom, still being a wife, still cracking jokes, and still living my life.  Here's one from today (dup from Facebook earlier in the day).

Still me!

I am loving all of my new headwear options too.  I have a great collection of baseball caps, scarves, and knit caps.  I've tried all types and don't have a strong preference for one vs. the others at this point.  The scarves do look pretty and are good for occasions when I feel like being a bit more dressed up.  Baseball caps are perfect for every day wear.  They are easy, versatile, and I have a lot of options. The knit caps are perfect for when I get cold, which is often.  I haven't worn my wig out yet but have that as an option too. Who knew that I would have so much fun losing my hair.

Speaking of losing my hair, I still have some hanging on for dear life, but not much. The top of my head is very patchy, and I really held my breath washing it after the gym last night.  Not too many casualties from the wash, thankfully. I am sure that round 3 will be the knockout round for my hair which is fine.  I am ready for it to be gone at this point because I am shedding really badly, but I can't bring myself to take a razor to it yet.  Maybe in a few days, but I just don't want to.  I'd rather let it come out on its own still but reserve the right to change my mind about that at any time.

As has been typical to my experience, the infamous barfiness set in as the day wore on.  My stomach mocks the anti-nausea meds that I have.  Maybe mocks is too gentle of a word.  My stomach flips the anti-nausea meds the bird. Today was a good day, and I am one step closer to the end of chemo. Working through the plan here. 

Monday, March 23, 2015

Day 47 - Workout

Man, I felt great today.  Woke up before my alarm, ate like a normal human, had a lot of energy, got a ton accomplished at work, and overall had a really great day.  I am so happy about my great day!  Not feeling terribly well on a fairly consistent basis really makes me appreciate the days when I do feel well.  Funny how cancer makes me appreciate things that I would not have given a second thought before Day 1.  Pre-cancer, I certainly took my good health for granted, and I know that I will never ever do that again.

Cancer has changed me.

Part of my great day included a trip to the gym tonight!  I went to an 8pm class with one of my favorite trainers, and it was awesome. I've still got some soreness around my port (I guess that makes sense considering it is completely foreign to my body), but I was able to push myself harder at the gym than I anticipated. I even ran a tiny bit.  It really felt great to get in a pretty hard workout.

I tried to not focus on tomorrow during the day today, but tomorrow definitely crept into some of my thoughts and was hanging like a bit of a black cloud.  Tomorrow is an important day, but I am not looking forward to feeling the way that chemo makes me feel.  I think that it is safe to expect for this round to be worse than the last as chemo does have a cumulative effect.  I do know that I will sit in that chair with a smile on my face, I will crack jokes with Mike and the nurses, and I will embrace the medicine that is working to make me better.  It's hard to dread chemo too badly since it is an important step in getting this very unwelcome cancer out of my body.

Someone posted in one of my Facebook groups that she is considering decline chemo for her stage 2, grade 3 (grade 3 = aggressive) cancer because she "does not want to deal with the side effects."  I don't judge because everyone's journey is very different, but that concept is very foreign to me.  No, I don't want to deal with the side effects either, but I also don't want cancer so chemo it is.  Chemo gives me the very best chance of shrinking/killing my tumor as well as any other cancer cells that made their way elsewhere in my body so BRING IT ON.

I reserve the right to whine about it as necessary later in the week.

Sunday, March 22, 2015

Day 46 - The Team

It takes a team to fight cancer, and I happen to have the best one out there.  I'll admit that I have to do the hardest work here, but my team is working hard too.  I got to see a lot of those team members this weekend and will see even more in the upcoming weeks, and that makes me so happy.

The team formed instantaneously on Day 1, starting with Mike.  He was, of course, my first phone call, and it was the hardest call that I had to make.  Granted, none of the calls were easy.  I mean, I had to tell my parents that their baby has cancer.  That is tough.

I was in DC for work conducting interviews for a position that we had open (how I managed that mentally is somewhat beyond me), and one of my co-workers/friends knew that I could be getting the news that I did that day.  Thank God she knew because all I had to do was look at her to tell her "it's cancer."  I just walked into her office and she hugged me for a long time while I cried.  I will never forget that.

I also saw a few other key team members that day.  One of my brothers who lives in the DC area texted me and said "I'm picking you up at 5:30."  I have no idea if he had plans that night, but if he did, he cancelled them just to be with me. I was so grateful.  I also emailed my aunt/uncle who live in the DC area early in the day on Day 1 to ask if I could come over that night.  I totally imposed on their night, but I had to see them.  (so needy of me)

I needed to be around people who love me, and all of those people listed above love me a lot.  I would have hosted a mini family reunion that night had I the opportunity.  It's not terribly like me as I enjoy some alone time and tend to take advantage of that when I travel, but there was no being alone for me that night.

I talked to one team member for an hour that night, an aunt who has waged her own battle with breast cancer.  I talked to countless people on Days 1 and 2 (and probably for many more days after that). I did a lot of talking but also did a lot of listening on those early days, and I continue to get such great support from my team on a daily basis.

It was hard for me to say goodbye to my mother and father-in-law this morning.  We had a very fun weekend together.  I felt great all weekend and had a normal appetite which was very nice.  I look forward to one more day of feeling well before round 3 on Tuesday.

Saturday, March 21, 2015

Day 45 - Pirate Playground

There is a playground in a very upscale neighborhood in Charleston that is pirate-themed.  There is a giant wooden boat with 3 slides, multiple overlooks, some tunnels, and ladders.  There is a lighthouse with one giant slide coming down from it, there are various treasure boxes throughout the playground, and it has standard playground fare like swings and monkey bars.  It's a really cool playground, and Henry loves it.  We all went to the pirate playground this morning, and Henry got to show off his tricks to Mike and his grandparents.  He and I had only gone previously so he was excited to show others this gem of a playground.

We all went out for lunch then Mike and his dad peeled off for golf.  The ladies and Henry did some shopping in the afternoon, and I took advantage of Grandma being here and took a nap.

It was a very nice Saturday.  The weather was perfect - a bit cool but not cold and a bit overcast at times. I love days like that.  They feel so cozy.

I love watching Henry play.  He has so much energy and a real zest for playtime.  He can run like the wind and is very enthusiastic with his climbing, sliding, and swinging.  He makes me smile.

I wore a scarf on my head today for the first time.  I still have hair, but it is becoming really patchy now, and I am also afraid to wash it (ew) because it is coming out so much.  I watched some videos and practiced various scarf-tying techniques earlier in the week so I was ready.  I was not sure how I would feel wearing a scarf on my head, but I liked it.  I put on a fair amount of makeup, some cute earrings and just rocked it.

I may have gotten a second glance from some people here and there, but no one's eyes lingered for too long, and if they did, I didn't notice.  I've amassed a great collection of headgear including hats and scarves, and I will enjoy trying various looks over the next few months.

Friday, March 20, 2015

Day 44 - Spring

Spring is a time of regeneration, renewal, and regrowth.  It is also a time of intense pollen here in Charleston, but thankfully it has not affected me as badly this year as it usually does.  I am getting a break! Surely it is because of all of the drugs in my system, but I will take it.  At least I am not barfy and sneezing my head off.

My Spring is going to happen during the Summer this year.  It is very much Fall for me right now, and that is ok.  The seasons are just a bit off for me this year just as other things are a bit off.  I'll enjoy the beauty of nature's Spring and will look forward to my own in a few months.

I feel much better today than I did earlier in the week, and I am very grateful to be back to myself for the weekend.  I dread the aftershocks of next week's chemo already but am going to try to put it out of my mind for the time being and just enjoy time with family this weekend. 

Today was a good day.  Very normal in all ways.  I even went to go get our taxes done...some things will never change.

Keeping it short today as I don't have too much to say.


Thursday, March 19, 2015

Day 43 - The Rocking Chair

When I was pregnant with Henry, one of the mandatory baby items on our list was a rocking chair/recliner for his room.  A lot of people recommended getting a more traditional glider chair, but I knew that we would be more happy to have the recliner/rocker.  We found one at one of the large baby retailers.  It's not much to look at (just a standard tan chair), but that chair has been very very well-loved over the years.

I was still pregnant when we first got the chair.  We carefully tucked it away in the room that we were working on for him, and I would find myself sitting in that chair at random times during the day and night.  I would rock back and forth and think about the little life that was going to be using that room in a few short months.  I would look at all of the decorations that we were working on for his room, and I would daydream about rocking him and reading him books in that chair.

Those dreams all came true.  I sat with him in that chair on the first day that we brought him home from the hospital, and there have been few days since that his rocking chair has gone unused.  Mike and I both logged countless hours in that chair with a sleeping baby on our chest both because there were times when he wouldn't sleep in his crib and times when we simply wanted to hold him in our arms.  I've slept with Henry in that chair when he's been flushed with fever, making us both sweat. I've sat in that chair watching him sleep.  I've cried in that chair a lot of times (as recently as last night) from so many emotions - happiness, uncertainty, fear, overwhelming love, frustration.

We've read so many books in that chair, and we started when he was a tiny tiny baby.  He loves reading books at night, and I love reading to him.  It is one of my favorite things to do.   Sometimes the books are silly, sometimes they are sweet, and sometimes they are downright funny.  I like some more than others, of course, but will read any of them to him anytime he wants.  I grew up surrounded by books and still love to read today.  I am glad that Henry shares that love.

Trying to put a mother's love into words is impossible.  Words do not exist that can describe the feelings that a mother has for her child.  Being a mother is the greatest thing that I have ever done and the greatest thing that I will ever do.  I am so lucky to be Henry's mom.  He is sweet, bright, funny, challenging at times, loving, curious, and just plain adorable (I know that I am contractually obligated to think that, but he's just really cute).

I'll always cherish the memories that I have from the rocking chair in Henry's room and am happy that he will still humor me with a rock and a snuggle.  We barely fit anymore because he is getting so big, but I'll squeeze.  Funny how a very simple piece of furniture can become so special. 

I was pretty much a mess writing this post.  I always have, always will think this way, but the thoughts have been amplified lately.  I've been very emotional this week, in general, and was a huge sap yesterday and today. I can't really blame hormones (or can I) since the Lupron injection that I get basically puts me into medically-induced menopause so I'll just blame being full of love for my sweet little boy.

Speaking of love, Mike's parents arrived from Virginia this afternoon.  I have not seen them since well before Day 1 so it was emotional (those damn emotions are really showing up in this blog post) to see them. I am very glad that they are here.

Wednesday, March 18, 2015

Day 42 - Rare and Aggressive

If you do a google search of triple negative breast cancer, the words "rare and aggressive" almost always pop up.  It surprises me that seeing those words in relation to the particular type of cancer that I have does not send me into a tailspin, but thankfully it does not.  I think I don't panic over those words because I am of the mind that any cancer is "rare and aggressive."  That is the nature of cancer.  Cancer is made up of fast-growing/out of control cells growing in the body that should not be there and are certainly not welcome.  Sure, within the world of breast cancer, triple negative is "rare and aggressive," but none of them are a picnic.

There is actually a large TNBC community (unfortunately) who are wading through this disease with me and who are also trying to demand more from their doctors and the research community.  I had a good phone conversation with my oncologist yesterday regarding my to-research list, and he is working with me to find answers to my questions.  I am specifically interested in this trial and whether I will be eligible for it when (if) it does open later this year (the article is somewhat sensationalized..be warned).  All of the information that I have found on it says that it will be for early stage TNBC cases who have completed traditional treatment and who test positive for the folate receptor alpha protein.  Could work for me, but I have no idea about the folate receptor alpha protein testing and whether it can be done on preserved tumor samples or has to happen on fresh tissue so I am on a call back list from the Mayo Clinic in Jacksonville to find out more information.  They should call in 5-10 days and will hopefully be able to provide more direction. I just don't want to lose the opportunity to be tested for that protein because it seems to be the key factor for the vaccine trial.

In the meantime, I will stay the course in my treatment because it is proven to work with this rare and aggressive cancer that I have.  I have been/am thinking about post-treatment options and am glad that I am making some traction. I've got plenty of time until I am "post-treatment," but I don't think that anything in the medical field, especially research and clinical trials, moves at a very fast pace.

The internet is both a blessing and a curse during this time in my life.  There is SO much information out there on TNBC, and I feel fortunate to be able to access that information at any time.  It's also sometimes hard to read some of the information on the internet so I have to exercise caution in what I read and what I seek.  It's an exercise in self-control and self-protection.

My witching hour held true for this morning.  Awake right around 3:00am, but I was able to almost immediately fall back asleep which was a nice change.  The bone pain seems to have lessened as well so it looks like I am on the mend in time to enjoy the rest of the week and the weekend before chemo round 3 rolls around next week.  It's so foreboding.

I had lunch with a friend from high school today.  We had not seen each other in about 16 years, and we both happen to be living in Charleston now.  It was so fun to see her, and we shared some good laughs and memories.  It's funny how things come rushing back when seeing an old friend. 

I managed to convince Henry to let me rock him in his rocking chair tonight before he got in bed.  I had not done that in a while, and he was perfectly content to snuggle with me and let me rock him for a nice long time tonight.  It was the perfect way to end the day, and I hope that he loved it as much as I did.

Tuesday, March 17, 2015

Day 41 - 3:00am

3:00am seems to be my personal witching hour.  If I wake up during the night, it is generally around 3:00am (well lately, that is).  This morning, I woke up with really bad pain in my knees.  I assume that it is from my bones working to regenerate white blood cells.  Bone/joint pain is a common side effect from the Neulasta injection that I get after each chemo treatment.  It is more common to experience the bone pain in large bones such as the legs and hips, but the knees are not out of question.  I felt like a 90-year old for a good portion of the day and was not exactly thrilled about it. 

The great news is that my stomach is almost back to 100%...I guess I am just trading some knee pain for that.  I loaded up on Advil today, went for a walk to try to work out the kinks, and worked a normal work day.  Quick trip to the oncologist office for a Lupron injection but otherwise a fairly uneventful day.

I did cancel my trip to the gym that I had planned for this evening due to the knee pain.  I figured a gentle walk around the block would be beneficial, but more difficult exercise was not a good idea since walking down the stairs in my house was not exactly pain-free today.

After Mike got back from dropping off Henry this morning, I had a good long vent/cry to him.  It was very cleansing and helped me to deal with my ongoing frustrations that I am experiencing this week.  Trading in one ache/pain for another is not really of interest to me, but none of this is really of any interest to me.   This is the hand that I have been dealt, and I am mostly handling it well, but I sense that my frustrations and annoyances will continue to grow vs. fade as I work my way through chemo. 

I am giving myself permission to be cranky and hope that all will forgive any whiny posts on occasion.

In speaking with a co-worker today, I came to the realization that I am even more grateful for my job right now than I was on Day 1 (and that was a lot).  I am so thankful for the focus that my job requires as it allows me to tuck cancer away for a very long portion of the day.  I think that I would be a real mess without the "distraction" of work.

I also maintain my gratitude for my wonderful husband and son.  That goes without saying on all days, but I still like to get it out there on occasion.  Henry went to school decked out in green today because he didn't want the "St. Patrick's Leprechaun" to pinch him.  His school usually has a lot of fun with St. Patrick's day, and I am glad that he was into the festivities even bright and early this morning. 

Henry had the biggest set of the giggles tonight.  It was contagious and totally made my day.  He has the best belly laugh ever.

Monday, March 16, 2015

Day 40 - Riptide

I'd like to be able to use the terms "riptide" and "rip current" interchangeably in this post, but a quick google of both told me that I would be wrong in doing so.  As I was driving Henry to school this morning, the song Riptide by Vance Joy came on the radio.  I've loved that song since the moment that I heard it (several months ago), and know that it has special meaning for some of the people reading this post.  It's a very catchy and soulful song.  If you have not heard it, I recommend taking a listen. Today, I wish that Vance (I feel pretty comfortable calling him by his first name) had called his song Rip Current instead of Riptide.  Not nearly as catchy, though, so I get it.  I just ask that he think of me next time. The term "rip current" is more applicable to me right now.

A rip current is a strong, localized, and rather narrow current of water. It is strongest near the surface of the water, and it moves directly away from the shore, cutting through the lines of breaking waves. Rip currents can be hazardous to people who are in the water. Swimmers or floaters who are caught in a rip and who do not understand what is going on, may not have the necessary water skills, may panic, or may exhaust themselves by trying to swim directly against the flow of water

Water safety rules suggest that one should swim parallel to the shore if caught in a rip current vs. trying to swim directly back to shore against the current, which seems like it would be the most direct path.  I feel like I am working my way out of a rip current right now.  I am swimming parallel to shore, trying to get get out of the current, but not able to do so yet.  As much as I would like to just get back on shore, I've got some more work to do before I get to that point, but I will get back on shore. 

(Sorry if this gigantic metaphor is annoying.  Stick with me.)

My stomach was still not back to normal today, and I am OVER IT.  Totally over it.  I fear that it will be even worse for the next two chemo treatments, and I am not looking forward to it all all.  Of course, the chemo infusions are an important (perhaps the most important) part of my path out of this rip current, but ugh.  So annoying.  I just hate not feeling like myself.

I suppose that I could be experiencing some of the stomach bug that Henry had about a week and a half ago, but I doubt it.  I'll continue to blame things on the chemo.  It's nasty stuff.  Necessary but so vile.

Enough feeling sorry for myself.  Today was a really great day.  I took Henry to school this morning, which was a big deal for me.  He has a new teacher that I had not met, and I just really wanted to do something normal like drop him off at school. It was good to get eyes on things and to say hi to several people at his school.  I took the dog for a walk during lunch today to enjoy the beautiful weather, and I registered for a class at the gym for tomorrow night at 7:45pm.

I was going to try to go to the gym tonight, but I'd rather wait until I (hopefully) feel better tomorrow.  I'm not drinking any green beer right now so may as well spend St. Patrick's day doing something healthy for my body and mind.  I'll talk to the trainer before the class starts tomorrow night and tell him what is going on so that he is not wondering why the heck I am not doing more.  I'll be working really hard even if it does not look like I am.  My stamina/endurance is just not what it was.  I'll get back there.

I've always enjoyed exercising and have gone through phases when I am more committed to it than others.  I know that my body is (was..not currently) capable of working out really hard and doing great things, but my mind gets in the way many times, especially when it comes to running.  Yes, my body can run, but my mind often interferes.  Cancer is going to change that for me.  Once I know that I can mentally get through all of these treatments (I can and will), there will be no more excuses. Yes, I will have to get my body back in shape, but I will have no sympathy for any mental exercise blocks.  I look forward to being able to push myself to exercise harder both physically and mentally, and I know that my body is capable of doing more.

Just as soon as I get back to shore...

Sunday, March 15, 2015

Day 39 - My Rainbow

I've been thinking about "my" rainbow a lot lately (see Day 7 for more info).  I need to remember that rainbow on days like today.  Today was a fine day, but the nausea still hasn't lifted entirely, and I just found myself frustrated from time to time.  Annoyed that I don't feel 100% like me and a bit cranky that I can't do much about it.

The image of that rainbow is still very clear in my mind, and I think that it will be during this whole process.  I continue to hope that it meant that "while things might be tough right now, all will be ok." It was just so perfectly timed right there in the sky right when I needed it that I really do think that it was there for me.  Perhaps I am thinking a bit too highly of myself...possible.

We made the most of the day today.  Did a little shopping, had Mexican for lunch (which was so good despite some nausea), and Henry and I spent a lot of time outside this afternoon.  Sounds like a totally normal Sunday for us, and it was.  It was just annoying to have my uninvited visitor top of mind while I was trying to do these other much more fun things.

The weather here is absolutely gorgeous.  Mike took advantage of it on the golf course, and Henry and I camped out in the front yard. Perfect way to spend the afternoon all around.  The pollen is starting to show it's face on my black car...slight dusting of yellow after only a few minutes.  I am hopeful that the Claritin that I am already taking will help ward off any major reactions to the pollen. I've always had allergies, but maybe everything else in my system will prevent them from being so bad this year.

I wore a hat when we were doing our shopping earlier.  I like my new "do," but I felt more comfortable with a hat on for some reason.  I felt a little self-conscious without the hat...I bet that some of that will pass with time.

Henry was full of energy today, which was entertaining and times and challenging at others.  I just don't understand where that energy comes from and am jealous of it.  He and I played a lot, both inside and out, and spent some time snuggling and watching mindless TV.  Nice balance of fun and snugs (snuggles).

Saturday, March 14, 2015

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.

Friday, March 13, 2015

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.

Thursday, March 12, 2015

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. 

Wednesday, March 11, 2015

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.

Tuesday, March 10, 2015

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.


Monday, March 9, 2015

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.

Sunday, March 8, 2015

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.

Saturday, March 7, 2015

Day 31 - The World Wide Web

Cable and internet are down at our house, and the world is ending.  Ok, not really, but there has been a lot of drama surrounding ATT U-Verse today.  Turn out that something is seriously wrong with the line going into our house, and the tech who came to take a look was unable to fix the issue because it is a "facilities" problem.  Goodness knows what that means, but I hope that facilities will be able to head on over tomorrow so that we are up and running on Monday.  Working from home really only works when my phone, which relies on the internet, and internet work.

I managed to scrounge up some old DVD player that must have missed one of Mike's recent purges of stuff in our house, and Franklin picked up some movies to watch from Redbox at the grocery store.  We are going old school tonight.

Thank goodness that my iPad has cellular.  I mean, what would I do without that in these very very first world times.  Days like this make me realize how entirely dependent we are upon technology.  Henry knows no different and absolutely could not understand why I was unable to pull up Paw Patrol videos on YouTube this afternoon. Quite frankly, I was happy to have a break from Paw Patrol.

We had a lovely day today.  Spent the morning at the aquarium and showed Uncle Frank all of the ropes there, went out to lunch, and Franklin and Henry spent several hours at the playground this afternoon while I lounged around the house, chatted on the phone, and dealt with ATT customer service. Very nice day indeed.

Henry was able to play outside a lot today which was a nice change from earlier in the week. He had a mild stomach bug for several days this week so we were all mostly suck inside.  We were all a bit stir crazy so I am glad that we were able to be out so much.

Mike is having a nice time in Virginia, and I am glad.  We will also be glad to have him home safe and sound tomorrow night. I really hope that the cable is up and running by the time he gets home. I am sure that he has some Golf Channel to watch.

Friday, March 6, 2015

Day 30 - Oh Brother

It's officially brother weekend 1 of several for 2015.  Mike hopped on a plane today to go and visit one of his brothers in Virginia, and one of my brothers came down for the weekend.  I have 4 wonderful brothers, 2 biological brothers and 2 by marriage, and in turn, Henry has 4 wonderful uncles.

Henry, like me, is lucky to have great uncles.  Frank, Ben, Ryan and Kevin all think that Henry has hung the moon, and Henry certainly reciprocates those feelings.  Franklin waited until late in the night for Henry to be born and was one of the first people to hold him. Ben has spent countless days running up and down the beach with Henry. Ryan spent an entire morning building Henry a giant boat with a cardboard box and random household items.  Kevin sat on our couch for hours with newborn Henry napping on his chest.  Kevin didn't move because he didn't want to wake Henry and spoil those perfect moments.  These are small examples of how these men have dedicated their time and their hearts to my son.  It is a beautiful thing to witness, and I am so glad that Henry has such wonderful uncles...I know what it is like.

I have always been very close with my uncles and aunts and am a better person for it. Many of my happiest memories include my aunts and uncles who devoted much time to my brothers and me.  Mike ran into one of my uncles, quite randomly, tonight in Virginia, and they ended up having a drink together.  I am so jealous!

We don't really have huge plans for Brother Weekend Charleston but will have fun spending time together, relaxing, and talking.  We do intend to go to the aquarium tomorrow morning.  My dad gives me a membership to our local aquarium for my birthday every year, and it is a gift that we use over and over again.  Henry loves to see the fish and watch the scuba divers in the big tank.  Last time we went, we visited the sea turtle hospital in the basement of the aquarium.  The Charleston aquarium rescues turtles, both in the local area and along the east coast, and brings them to the aquarium for rehabilitation and release.  One patient was bitten by a shark, and another was "bitten by a boat" (as Henry says), and it is interesting to hear how far they have come and about their upcoming release.

Someone told me that I'll know when my hair is about to go by some pain in my scalp. She said that it feels like you have had your hair in tight ponytail for too long.  I started to have some of that kind of feeling on parts of my scalp today so I don't think that it will be too long now. I told Henry that I will lose my hair today, and he said "oh ok" and went back to playing a game. Sweet Henry.

I do have an amendment to a blog post from yesterday:  I am ALSO looking forward to next week's chemo treatment because I will be one step closer to being DONE with chemo!!  Someone pointed out that I should have mentioned that, and she is absolutely right.  Next week's chemo will be 2/8 so I will only have 6 more to go.  #math.

Thursday, March 5, 2015

Day 29 - Vice

I cannot get enough of the Vice: Killing Cancer special report.  If you have have HBO (or are a good Googler.  I think that the full documentary is available on YouTube), I encourage you to watch.  Here's a sneak peek of the episode below..look at me embedding content.


Researchers/physicians are taking some common and some not so common viruses, mutating them so that they are not infectious and injecting them into people who have cancer and have run out of options.  They have seen absolutely fascinating results. In many cases, the viruses are causing patients to go into full remission.  Full remission.  Part of this report follows a young girl who was on the brink of death from leukemia.  Her family was desperate, and in her final hour (pretty much), she was enrolled in a clinical trial in PA during which she was injected with a modified HIV virus, one of the more scary viruses of our time.  The HIV virus attacked and killed the cancer cells in her body.  After two very very scary weeks during which time she was in a coma because her body was working so hard, she woke up and within four weeks, no cancer could be found in her body.  No cancer could be found in her body after her parents were previously told to take her home from the hospital because there was nothing left they could to to treat her cancer.

I can't even get over how absolutely amazing this is, and I am fascinated by the science behind it.  What caused a doctor or group of doctors to say "hey, maybe HIV can kill this cancer."  Incredible.

I read a Forbes article about this documentary that, of course, cautioned people from getting to crazy excited about this medicine because it is still being tested and is not applicable (yet) to most solid tumors (such as breast cancer), but how could one not get crazy excited about something so revolutionary.

Anyway, I encourage you to watch the documentary if you're so inclined.  It is worth 42 minutes of your time or, in my case 42x5 minutes of my time...can't get enough. For some reason, I could not find it via Uverse HBO On Demand but could through HBO Go on my Roku.  Go figure. Uverse On Demand is not the best though so other providers may make things easier.

I continue to feel well this week, and I think that my body is bouncing back nicely from last week's chemo treatment.  I am dreading next week, on one hand, because I know that I will feel pretty lousy for a few days after treatment.  On the other hand, I am looking forward to next week because that horrible red medicine is going to make me better.  The lousy is worth it, and knowing what to expect will help me manage things a little bit better.

Wednesday, March 4, 2015

Day 28 - The Quilt

I received a quilt in the mail today.  It is a hand-made quilt crafted by members of the First Baptist Church of Aiken, SC where my Grandma and Grandpa Overman have been members for more years than I've been on this earth.  My Grandma requested that the church prayer group make the quilt for me, and I was moved to tears when I opened the package.  Each string tie in the quilt represents a prayer that was offered up on my behalf by someone in the church congregation.  They have provided me with a way to covered (in a very literal way) in prayers.

There is an off chance that I met one of the creators of this quilt when I was very very young, but it is highly unlikely which means that people who do not know me at all took the time to make me this most touching gift.  People who don't even know me did something so kind and generous for me. It will be difficult for me to properly express my gratitude for the prayers and the symbol representing those prayers.  I will try, but I don't know that the words will come out the right way, but hopefully they will be able to know how grateful I am.

As I've said, I can't begin to list everything for which I am grateful, but I will try on occasion.  I am grateful for people who are sending me baseball caps from various areas of the country to keep my noggin warm and to also represent their strength and prayers.  I am grateful for the calls, texts, Facebook messages, cards, smoke signals, owls (NERD), and emails that I get on a regular basis.  The support and love has simply been overwhelming.

Over the past week or so, I've been working on a to-do list for my doctor. Well, that kind of sounds bad.  I am not really going to boss him around (I will politely ask like a proper southern lady), but there are many things that I would like for him to research on my behalf.  Triple negative breast cancer is a hot topic in the cancer research community, and there are a lot of medications, treatments, and clinical trials that I would like to learn more about.  I listened to a webinar about TNBC (triple negative breast cancer) yesterday which really helped with some items for the to-do list.  One of the doctors on the webinar encouraged participation in clinical trials, and something that he said really resonated with me "past participation in clinical trials helps us offer the best possible treatment to current patients."  Those who have gone down this road before me have helped blaze the trail for my treatment plan, and I am so grateful to them.  If there is anything that I can do, at any point during my journey, to help someone in the future as well as improve my current treatment plan, I AM IN.

TNBC is a particularly tricky type of breast cancer (not that there are any nice kinds) because there are no hormone receptors in triple negative tumors (hence the triple negative designation), and many breast cancer medications are designed to target hormones (can we ever get away from blaming things on hormones).  I've you've ever heard of someone having to take a pill for 5+ years as part of treatment for breast cancer, she is talking about taking a pill to suppress hormones in the body to help prevent cancer recurrence.  There's no 5-year pill (yet) for TNBC, but there are some post-treatment treatments (say that 5 times fast) that are being heavily researched.  The Mayo Clinic in Jacksonville is likely to even open a TNBC vaccine trial at the end of this year/beginning of next.

All are on the to-do research list that I will politely hand off to my doctor when I see him for my chemo treatment next week. It's color-coded and on a piece of paper with the Nelson Mandela quote "It always seems impossible until it's done."  Fitting, no?

Most TNBC is highly responsive to chemotherapy, which is great news and certainly helps me through the barfy days. I swear that my lump feels smaller already.  We'll see what the tape measure says next week. 

Tuesday, March 3, 2015

Day 27 - Carbs

PC (pre-cancer), I spent a lot of time focusing on food.  What to eat, what to not eat, when to eat, how much to eat, etc.  You name it, I agonized over it. I had basically eliminated many food groups from my diet - diary, all grains, sugar, beans, to name a few.  I felt great!  I had energy for days, which lead to really incredible workouts at Orangetheory Fitness and really solid sleep at night.  My carbs came from starchy vegetables like sweet potatoes, white potatoes, and squash.  Nary a refined carb passed my lips, and I basically was only eating fruit, vegetables, meat, and healthy fats. Some might ask "why would you do that to yourself?"  I will refer you to the "energy for days" comment above. 

Boy has that changed.  While I would like to eventually get back to my ultra-healthy ways of eating, it's just not happening right now.  I have been advised to "eat what sounds good," and even if I had not gotten that advice, I would be doing it anyway.  The nausea from my first round of chemo rendered it absolutely impossible for me to get a vegetable past my lips, even my beloved eggplant and beets (weird I know).  Fruit, ok.  Vegetable, absolutely not right after chemo.  I can stomach some veggies now.   

The nausea is much much better and I am able to expand my palette a little bit, but portion sizes are still very small.  I do realize that focusing on my overall health is extremely important during my treatment, but the AC chemo is not allowing me to be too particular (nutrient-wise) about what gets into my belly.  All calories are good calories at this point. Perhaps the next type of chemo will be more kind to my stomach. If not, this just may be the year that I can get back into a two piece bathing suit. (I say that in jest for anyone who just thought "I can't believe she is thinking about something so trivial right now.")

I will also not have to worry about my hair blowing into my eyes at the beach this summer. No pony tail, hat, or headband could tame the beast that is (soon to be was) my hair, and it was always getting into my eyes.  Bright side.  This year, I will have to worry about sunscreen for my bald head (or semi-bald head because my hair will grow back over the summer). I'll be able to relate to balding men across the world this year.  Bright side. 

I plan to park my potentially skinny, very pale, and probably pretty bald self at the beach as much as humanly possible this spring/summer.  I love the beach, and we are so fortunate to live a mere 30 minutes away from it.  I'll probably have to get some kind of tent or umbrella this year because chemo can increase sun sensitivity, but that is ok.  I'll lather up in high SPF, which I do anyway, and park it.  Henry loves the beach, I love watching him love the beach, and Mike loves it as long as he has some kind of activity to do.  He can't just sit there for hours like I can, but that is typical of him anyway. 

Henry has energy for days regardless of his particular dietary choices at any given time, and his energy increases tenfold at the beach.  It invigorates him and always has.  He runs and runs and runs, jumps in the waves, digs a few holes, and runs some more.  It is both tiring and extremely impressive to watch. 

Hopefully we'll be able to convince some friend to join us at the beach this summer too.  It's usually a pretty easy sell.

Monday, March 2, 2015

Day 26 - Travel

Last year, I traveled for work at least once a month with a few exceptions.  I don't think that I traveled in June, and I know that I didn't travel in December.  The trips were all over the place, and there were some fun trips along the way.  In September, alone, I was in Chicago, Milwaukee, Las Vegas, Los Angeles (for approx 13 hours), and Texas.  I didn't even have time to reach out to LA family while I was there because I landed at 9pm, slept, looked at two hotels for events, and took off at noon the next day.  It was crazy and very exhausting.

This year will be different.  I will not be able to travel as much as last year, and that is a good thing.  I took two work trips already this year - one in January, and one in February, and that will be it for a long time. My treatment plan will not allow for travel, and it will not allow me to keep the pace that I did in 2014.  This will be a time for slowing town, a time for healing, and a time to really focus on what is important in my life  - family and health.

I do have an event in LA in October that I would like to try to work.  It is at the end of October, and if I can start my radiation no later than the beginning of September, I should be able to go.  Maybe Mike and Henry will join me, and we'll make a trip out of it and see our family out there.  I do love Southern California.  The event is going to be at the Millennium Biltmore in Downtown LA, which is a beautiful hotel, but it is insanely creepy.  There is absolutely no way that it is not haunted.  I was there for 1 hour in broad daylight in the morning and got the chills a few times walking through the place.  Should be interesting if I actually get to stay there for a few nights.  I promised a co-worker that we could get adjoining rooms in case we get spooked during the night.

There is something about travel that I like.  I've been fortunate to see new places, stay in beautiful hotels, and meet very interesting people along the way, but work travel can be lonely.  Sure, I am up for walking around a new place by myself or having a meal by myself, but there is only so much of that one can do.  I enjoy the opportunity to travel to these places, and I enjoy coming home from them even more.  I've often crept into Henry's room late at night after returning from a trip to just look at him for a little while and kiss his sweet sleeping face (I do that every night, to be honest, but there is something different about it after being gone for a little while).

Henry continues to be my little hero.  I was showing him pictures of women without hair over the weekend to get him used to the idea.  As I was showing him a picture of a particularly striking woman, I said "isn't she beautiful."  "Yes, mom.  She certainly is."  He loves to use "certainly" in conversation.  It is very endearing.

I talked to a woman today who is a 15-year survivor of triple negative breast cancer, and it was so great to talk to her.  She had some helpful advice and gave me some great suggestions to help cope with anxiety and negative thoughts.  She recommended starting something called "The Morning Pages."  Each morning (or whenever) hand-write 3 notebook pages worth of thoughts.  Just random free-flowing thoughts. No editing, spell checking, or monitoring what I am saying.  I am to allow it to be a place where I can express anxiety and worry, and it should be my only place/time to worry.  As she said, if a thought comes into your mind, tell yourself that you are saving it for "The Morning Pages" and move on with your day.  I like it.

Now, I am off to find the perfect notebook for The Morning Pages.  I've got one in mind...

Sunday, March 1, 2015

Day 25 - G.I. Jane

I was pretty tired this morning from staying out way past my bedtime last night, but it was worth it.  We had a great time with our friends and got to meet some new people along the way.  We went to a late dinner at a restaurant downtown called Fish.  Little did I know that the bar at Fish turns into Club Fish as Saturday night wears on.  Club Fish was the total package - loud, dark, and full of girls wearing hardly any clothes.  I ran into some of those girls during a trip to the ladies before we left.  They were loudly chatting and carrying on, and I was hoping that all of their parts stayed in their very stretchy dresses.  There was a line, of course, and a young(ish) girl stood behind me.  When it was my turn, she said "go ahead, miss."  Go ahead miss.  MAN, am I that old?!  I thought that I was dressed pretty nice in my black dress and tall brown boots, but apparently, my age is showing a little bit. Go ahead, miss.  I had fun telling everyone that story when I returned to the table.

I was saying goodbye to our friend Michael last night, and was telling him that I am going to call him when my hair starts to go so that he can bring his clippers over and buzz my head.  Someone else (unaware of my situation) overheard me saying that and said "what are you going G.I. Jane on us?"  He has no idea.  Yes, I am going G.I. Jane, in more ways that one.  Such an apropos remark given the current test of my physical, mental, and emotional abilities with which I am currently being presented.

It was rainy and dreary in Charleston today so we stuck to indoor activities.  Mike and Henry ran some errands and got Henry a much-needed haircut while I devoured a People Magazine that a friend sent to me and relaxed for a little while.  In the afternoon, I took Henry to play with a friend at Monkey Joe's.  Monkey Joe's is a kid's dream come true - bounce castles, slides, and junk food.  It can get really crowded, and the big kids can be a problem, but Henry loves it so much and can totally hold his own with the big kids.  He's always been able to do that.  Mike enjoyed some well-deserved down time while Henry and I were out.

Tonight at bedtime, Henry chose a book of Irish Stories for Children that his grandma got him when she went to Ireland a few years ago.  It is a very nice book, but I can only pronounce every other word in it so I just make up names and locations as I go.  There is a lot to love about the Irish, but their affinity for spelling things exactly opposite of how they should be pronounced is not one of them.

Over and Out,
G.I. Jane