No Go on Chemo

I’m bummed…went to the chemo lab today for my treatment, but my labs weren’t acceptable, so they sent me home. I was shocked because I’ve been well enough for all this travel and until last night/this morning, I’ve felt great. I was physically exhausted when I woke up this morning but I attributed it to being on the go nonstop for the last week. It makes sense now that I know why. My white blood count was the culprit.

I don’t have to go on antibiotics thankfully, I’m just supposed to do lots of hand washing and not be around anyone who is sick.

I always know it’s a possibility, but I don’t like missing treatment. This is my second one missed. I won’t make up the missed ones so I’m getting two less treatments than the original plan. That’s the bummer part but on the bright side, I should be feeling really good for the fundraising event on Saturday. I can’t wait to see everyone! Remember if you can’t attend, you can still make a tax deductible donation online.

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A Cause Close To My Heart

It’s been a long week but one I’m glad to say I’m pretty sure I’ve not missed a single beat.

After that last treatment of Carboplatin (on the 13th), last week’s Taxol-only treatment was a welcome change. Carboplatin kicked my tail, reminiscent of AC days. But I’ve done great since last Thursday’s treatment, thankfully. In fact, I’ve traveled to NYC, then NC and am currently in Dahlonega for work meetings. I haven’t stopped for one second. I’m ready to kick it down a notch on the travel part, but am thankful I’ve been feeling well enough to be on the go.

Since my diagnosis, I’ve been so fortunate to have so many different means of support. Beyond fortunate. Most prominently my amazing family and awesome friends. No one is luckier than me in that area, I’m sure of it. But also, I have support from so many people I don’t even know. It’s overwhelming to a degree I cannot explain.

In addition to the people connected to me through my family and friends, there are many resources online to connect to other cancer survivors, breast cancer survivors and even triple negative breast cancer survivors. It is comforting–yet also terrifying–to connect with so many others going through the same thing as me. You don’t wish this disease on anyone, but being able to talk to someone who heard those same words as you at diagnosis, faced their first scary chemo treatment like you, and like assured their fearful family and friends that they were going to fight the hard fight no matter what…it brings some comfort to a fearful situation.

In these online support groups, you read so many different stories of brave women battling this disease. You encounter every type of person and every emotion imaginable when facing cancer. Positive and negative. Fear and bravery. Rejoice and disappointment. Anxiety and calmness. Confusion and acceptance.

There are certain women I encounter in these groups whose stories really stick with me. I encountered one of those women on December 27 in a Facebook group for triple negative breast cancer. To say that her post that day was heart wrenching doesn’t even begin to do it justice. From the second I read it, I immediately felt her fear, pain, panic and sadness and I knew I would never forget this person.

She was a young wife (age 40) and mother of two babies ages 1 and 3 who was in the process of learning but not yet accepting that she had become terminal with mere weeks left to live. Even then, she wasn’t willing to give up the fight and planned to try a new intense chemo treatment beginning that Monday. She, like all of us, didn’t understand why a strong fight and a relentless will to live on for her babies wasn’t enough to reverse this awful sentence she was given. In shock, intense emotional pain and grief, she pleaded for her own life. Not her own life for selfish reasons (for which she would have been rightly entitled anyway), but instead for the sake of her children. She did not want them to be without their mother. She did not want her loving husband to raise them alone, without her.

From the moment I read her post, not one single day has gone by when I didn’t think of her and the panic she was feeling while writing that post. It really got to me. As I received good news that my tumor was shrinking, I couldn’t stop imagining her clinging to her babies with every ounce of strength she could conjure, holding onto that last shred of hope. As I walked into the chemo lab for my own treatment and saw the many faces of fellow patients waiting for theirs, I thought of her and wondered whether she was also sitting in a recliner eagerly accepting the medication, albeit poison, designed to heal her body and praying that it would.

I never spoke to this woman. I did comment on her post to extend support and let her know I was praying for her. In fact, I commented multiple times trying to get an update on her status…hoping, PRAYING that she would get the miracle she was begging God for and have more time with her family. She had a lot of women in the group praying for her. But no one was sharing an update if they had one. After weeks with no update, I began to fear the worst but continued praying for her on a daily basis.

Sadly, I just learned that, on February 19, she lost her battle with triple negative breast cancer. When I read the post about her death this past Friday night, it took my breath away. This person I don’t know, have never met or spoken to, impacted me in ways I can’t explain. I can’t stop thinking about her two babies who lost their mom at such a young age, and her widowed husband who will raise them without her. Mostly I think about those pleading words she wrote so clearly depicting her raw, terrified emotion on December 27 that will haunt me forever. More so than my own experience with triple negative breast cancer, her story ignites an angry fire inside me against this ugly disease. It’s for people like her that I want and need the world to know why we must have more research on this specific, aggressive subtype of breast cancer. First and foremost we need a cure, but we also need targeted therapies to reduce the likelihood of recurrence. We need specialized drugs to kill off the tumors and keep them away for good.

It’s for people like her and the families left behind that drive me to bring light to triple negative breast cancer – a subtype of breast cancer that tends to strike young women like her and me.

And that’s why we are holding an event this Saturday, March 1, to benefit the Triple Negative Breast Cancer Foundation. Let’s join together to spread awareness and raise money for this organization to help find a cure for the disease that rips apart the lives of so many families. Every small action makes a difference, and even if you can only give $5, together we can prevent other families from losing their mom, wife, sister, daughter, aunt, cousin, friend.

I hope you will join me, my family and Rhythm Dance Center this Saturday, March 1, in pulling off an amazing event and to reach, even exceed, our goal of raising $10,000 to put an end to Triple Negative Breast Cancer. If you can’t come by in person, I hope you will consider a donation online, which is 100% tax deductible.

Thank you!

http://tnbcday2014.kintera.org/faf/donorReg/mobileDonorPledge.asp?ievent=1092134&lis=1&kntae1092134=0C941CAA39D74D018F76033B85DBDEBB&supId=400120992&team=0&scWidth=320&extSiteType=

My Own Personal Summer

Not much to report this week except I thankfully did get my treatment yesterday, despite yet another winter storm that closed the cancer center Wednesday and delayed the opening on Thursday. Very uncommon for Macon to have this kind of weather, much less twice in the same month! I was grateful that they didn’t make me wait until today to get my treatment.

So far I’m feeling ok. There is a definite noticeable difference in how I feel with the Carboplatin added in, which is to be expected. It will make me look more forward to my Taxol only weeks.

Despite the wintry weather and frigid temperatures, this past week and especially the past couple days, I’ve been having my own personal summer. Yep, hot flashes. Except I’m not sure why they coined them “flashes”…they are more like hot minutes.

For those of you who don’t know (and don’t mind a bit of TMI), premenopausal women like myself almost always experience what is referred to as “chemopause” while undergoing treatment. We are subject to any of the side effects that you hear menopausal women complain about (according to Brent, I haven’t yet gotten to the evil mood swing phase…fortunately for him!).

Until recently, I’d only been having periodic hot flashes at night. Lately, however, they’ve become very frequent and very pronounced. Daytime, nighttime, anytime. I don’t think I ever realized how powerful they are and how you can’t just ignore them. They overcome you. Even as I type, my face is flushed from my most recent “flash”.

Anyway, that’s just one of the many lesser known, lovely side effects of chemo. There are other side effects I experience that I don’t and won’t write about here, to spare you from the TMI factor (you’re welcome), but this one I felt was safe and it’s the main issue I’m having now other than fatigue.

Who knows what the weekend will bring. Sundays have been my “bad” days this time around so we’ll see if the Carboplatin affects my weekend more so. I have lots of work travel the next two weeks, so I need to feel good!

Don’t forget about the fundraiser for the Triple Negative Breast Cancer Foundation on 3/1/14 at Rhythm Dance Center in Marietta. If you can’t attend, you can still donate online if you choose. If you plan to attend, it’s just a $10 minimum donation at the door. If you want to participate in the Dance-a-Thon, it’s a minimum of $50 in pledges. Here’s a link again to the page. It’s easier to view on your computer than on your phone.

http://tnbcday2014.kintera.org/faf/donorReg/donorPledge.asp?ievent=1092134&lis=1&kntae1092134=74E1CF51D5194B44A59DA24AD127A3A1&supId=400120992&team=0&nmv=true

Hope to see you there! And if so, pardon me if I have to step outside to cool off!

No Soup For You!

For anyone who didn’t watch Seinfeld, that header will be meaningless. For the rest of you, stay with me. You’ll get there.

But before I get to this week, I need to rewind because it’s been a while since my last post.

For starters, my awesome sister and her dance studio, Rhythm Dance Center (in Marietta), along with other family members and friends are hosting a family fun fundraiser “Bullseye Bash” on Saturday, March 1. This fundraiser is for the Triple Negative Breast Cancer foundation, a non-profit 501c3 organization that funds research specifically for triple negative breast cancer, the kind I have and the kind that’s been perplexing scientists for years. Progress is being made, but we desperately need drugs to specifically target this subtype and to know more about where it comes from. I’m so excited about this event and to be helping others who share my diagnosis. Want to be involved or donate? Below is a link to the event. You can donate online but I’d rather see you there on March 1! 🙂 We’ll be having a dance-a-thon where you raise pledges for one-hour blocks of time, bingo, jumpy house, crafts, snacks and more. It’s just a minimum $10 donation at the door to enjoy all the activities. I’m so excited about it and hope to see (and even meet) many of you! All donations are tax deductible too. Win-win.

Here’s the link…
http://tnbcday2014.kintera.org/faf/donorReg/donorPledge.asp?ievent=1092134&lis=1&kntae1092134=8DB0061C5A354850B5A998A22A263F25&supId=400120992&team=0&nmv=true

Ok, so back to my last couple weeks.

On Jan. 30, Macon actually got a lot of snow (for us). Three inches, and some ice to boot. It was actually predicted (unlike Atlanta’s) so we didn’t have the chaos Atlanta had. All schools were pre-cancelled and since I’m mostly working from home lately, it didn’t impact me there either. On Thursday however, I did get my impact.

To begin the day, I had an appointment with my surgeon that morning for a follow-up, before my chemo treatment. No issues getting to the appointment at all. The best thing that came from that appointment is that he was able to confirm by ultrasound what my onc already knew. No sign of my tumor! All he found was necrotic (dead) tissue. So he confirmed that I have officially had what’s called a “complete clinical response.” So happy about that, but what we really want and need (and won’t know until after surgery) is a “complete pathological response.” That means that once my breasts are removed and the pathology report is back, it comes back completely clean. He believes that’s what I will get, so I believe that too. Believe with me!

During the appointment, I asked if there was any chance of me being a candidate for reconstruction at the same time as my mastectomy. That’s what I would prefer (it’s one less surgery, for starters). He’s undecided and said it would be a team decision/recommendation between him, my onc and the plastic surgeon. The reason not to do it is if we get a surprise on the pathology report that shows even a microscopic sign of cancer cells, I would then need radiation. You don’t want reconstruction before radiation is done. It creates all kinds of complications. So he’s talking to the others to get their feedback. More on that later in this longgggg post.

So, Brent and I leave that appointment and head across the campus to the cancer center. We were shocked to pull up to an empty parking lot. It was 1030 at this point. I walked inside, no sign on the door and it was locked. So what does that mean? No treatment today? I called the number and the message says they are closed for inclement weather? So we got back in the car and drove back home on perfectly snow- and ice-free roads, perplexed why they were closed and irritated that they hadn’t called. As it turns out, when we got home, we realized they had in fact called us…on our home phone. Why did I even give them that number? We don’t ever use it. Neither Brent nor I even know how to check messages. He finally dug out the manual and sure enough, they had called. Oh well, at least we still had the appointment with Dr. Martin. It wasn’t a wasted trip.

So Friday morning I called first thing but they couldn’t tell me if I could get my treatment because they didn’t yet know if they had my drugs on hand after two missed days of courier service. So I went to a work meeting and waited. Around lunchtime they called and said I could come in, so I finally got my treatment around 2p. For the first time ever, I even drove myself home from treatment. Full disclaimer: my mother-in-law and best friend were both with me and fully willing to take me home, but I felt fine, had my car there anyway, so I got permission from my nurse and left.

The crazier thing is as soon as I got home, I turned around and drove to Target and then out to dinner with friends. It was very surreal that I had just had chemo and was out and about. This would have never happened on AC. Just further proof that Taxol is much easier on me. I only had a day and a half of bad days. Nothing terrible, just exhaustion and flu-like feeling. I traveled for an overnight work trip Tuesday/Wednesday and felt pretty good.

On Monday (Feb 3), I got a call from one of the nurse practitioners at my oncologists office. They were concerned about my labs that had come back from Thursday, specifically my liver enzymes were very elevated. They asked me if I had been drinking alcohol (yuck…last thing I’ve had any desire for), taking excessive Tylenol or taking something herbal from the health food store. My answer to all was no, so they assume it’s because of the Taxol. So I went back in Tuesday morning for more bloodwork (it takes 24 hours to get liver test back so couldn’t wait til Thursday). They said they would likely adjust my dosage for Thursday to limit the stress to my liver. When I went in for labs they also said my BP was low (90/60) so I had to wait there for my white counts to come back just in case. But everything was fine considering.

Fast forward to Thursday (2/5)…we went in for my treatment, did more labs and waited to see the doctor. I felt very positive that I would get my treatment because I felt really good. My mom felt like I wouldn’t. When the doc came in she said that while my liver enzymes had improved (there are two enzymes they test, one was back to normal but the other one was still really high (normal is 30, mine was 137 last week…then dropped to 90 this week…better but not good)). Also, while my white count was high enough to give me chemo, my platelets were too low (must be 100 to get chemo, mine were 79).

So, you guessed it. “No soup for you!” I did not get a treatment this week. Kind of a bummer, but they said my liver is in distress and needs some time to clear out the toxins. So I’m ok with it. I was prepared this would happen at some point, so I’m rolling with it.

I don’t know what to do with myself having this break and knowing I’ll be feeling good for another week. Just pray that this break is what my body needs and I can resume this coming Thursday.

I also learned that I will be getting FOUR treatments of Carboplatin instead of three. I’m not sure why the change but it has to do with the research and protocol, not me specifically. That could mean that the April 3 date we’ve been counting down to may be pushed slightly since I missed a week. I’m not sure but I will find out this Thursday.

The last thing to report…my case has been presented to a panel of physicians for the hospital group that my doctors belong to. That occurred a while back, but my surgeon told me he was going to present it again given the success of my treatment. That happened this past Thursday. He asked for opinions on me having reconstruction at the same time as my mastectomy. The radiation oncologist on the panel said he felt that I should have radiation regardless of complete pathological response, based on my age, type of cancer, etc. He’s going to do more research but he doesn’t think I should forego radiation. I’ve known that was already a possibility, so I’m not surprised by it. It’s still not certain yet. It’s the first time I had heard of having it from a preventive standpoint rather than a necessary standpoint.

I will soon be going for a radiation consult with a different radiation oncologist than the one on the panel so we can get one more opinion on the decision. I’m not sure when a final decision will be made, but it sounds like I will most likely not be having reconstruction at the same time as my initial surgery. That’s a bummer, but I’m willing to do whatever my doctors recommend to give me the best possible prognosis.

Congratulations if you’ve made it this far into the post. Sorry for the length. Lesson learned on waiting too long between posts.

Please plan to join us on March 1 for the fundraiser!! If you have questions, let me know. Hope to see you there!