A new message for a new year.

A year ago, I sat here and implored the World:

Dear World: Tomorrow I bequeath to you my eldest son. Please be gentle with him. Tonight he sleeps, unaware of most of life's harsh realities. That sometimes people are cruel and that life is unfair. That decisions are difficult and rarely have quick and easy answers. And that he will sometimes make the wrong decisions and have to pay those penalties. World, all I ask is that you are kind and mitigate these things--that whenever there are cruelties there are people there, who can offer a kind word or a shoulder to cry on. That difficult decisions can be made, sometimes alone but often with allies. And that mistakes can often be fixed and aren't tragedies--but things to learn from. World, tonight my eldest son sleeps the excited, anticipatory sleep that comes before exciting adventures. Please be kind to him tomorrow and all the days forward.

How little I knew then. How little I suspected that it wasn't the harsh realities of peers in his classroom, but cruel sickness that would change his life. I look at the picture I took of him for his kindergarten year and I feel a longing. I long for a time before cancer, when everything was simpler and we were all a bit more innocent.

A year ago, I wasn't diagnosed. A year ago, we were carefree and neither of these beautiful children knew what cancer was or what it would be like to have a sick mom. The eldest is now intimately aware that life is unfair and sometimes the World is unkind.

Thankfully, the World did mitigate some of these things. The biggest little was blessed with wonderful teachers who were kind, thoughtful and funny. They cared about him (and really, all of us); they looked out for him in the school and helped him achieve his goals. We got to experience community and have wonderful family and friends rally around us during it all.

 Tonight, I have a new message for the world:

Dear World: Tomorrow I shall again send you my eldest son. You have asked a lot of him these last 12 months. You have asked that he become braver than ever and in return, you have taken a piece of his innocence. He will never again know a world where he will be ignorant of a parent's illness or the fear of watching his parent in pain. But, you've also helped to show him that during the worst times, there are those that he can rely on. You've shown him that even when it's hard, there can be normalcy. And we can persevere. You've taught him empathy, altruism and shown him that he is loved. Even though the last year was overshadowed by illness, I'm grateful that it's been tempered by kindness and love. World, tonight he again sleeps the excited, anticipatory sleep that comes before a new adventure. Please continue to be kind to him, for he is precious. 

The gratitude of normalcy

Completed my first week of infusion on Friday. 1 down, 5 1/2 to go! I also went to infusion on Friday. Things are progressing well. Because I continue to have the weird side effects, we've decided to discontinue the Tamoxifen (the anti-estrogen drug that helps prevent recurrent cancer) for awhile.

This weekend, we were lucky enough to have tons of family and friends come over to help with our massive home improvement project--taking up half the concrete pad on the side of our house. I chose to not do any of the heavy lifting or concrete bashing for fear of wrecking myself. But we had 7 people altogether come over and donate their time and energy to help. And we feel so lucky to have such great friends!

This weekend marked a turn for me. Even though I wasn't able to help with the manual labor, I was able to help take care of people and things. I haven't been able to do this for nearly a year. I can't tell you how awesome it felt to do something as simple as make a sandwich or play with the kiddos (or as complex as make the beer run)!

The next day, I even had enough energy to run out to the Falls (first time I've been since I moved here 14 years ago!) and just be with my family.

So, a big thanks to all that helped around the house and provided me with an opportunity to feel somewhat normal again: Neil, Brian, Reiko (who jack hammered like a pro!!), Ryan, Shannon, Levi, Tou and of course, Jason! I love you all!

Once more unto the breach, dear friends

It's been awhile since I updated. I am desperately trying to regain my normalcy as things are starting to settle back into a routine. Since this last update, there have been few things to update about. I feel like it's super mundane to talk about the readjustment to "normal" life. But that is what has me so tired out. I've spent ((counts fingers)) 9 months actively fighting cancer. My body has taken a beating. If there is a random, not-very-often-had side effect...I've gotten it. BUT. But I am still here. I still continue to thrive. What is resilience? It's such a buzz word in therapeutic circles. But, what does it mean to have it? How do you get it? Can it be lost?

Some of the hardest parts of healing are actually happening now, once the incisions are healed and the hair is returning. It's when on the outside I start to resemble Aug. 2013-Mary but on the inside? I'm still struggling to figure out who I am, post-cancer. NGL, dear friends...my bravado is shook just a titch.

This week I started radiation. I feel a bit like a child at this point. If I could (and my life weren't potentially at stake), I would honest-to-God stomp my feet and refuse to go. I don't wanna do it. I just don't. For so many reasons, but most of all? Because I just want to be EFFING DONE WITH THIS ALL. But if I don't do the radiation, there's a 30% higher chance of me having a re-occurrence of cancer in that area. My psych stats class may have sucked, but I do believe that's a statistically significant increase. I just feel like I'm waiting for the other shoe to drop. I've had such bad experiences throughout this (OMG, the nausea! Hospitalizations...all the crap) it's hard to believe that I might actually have an easy time of this. This may shock some of you, but I can be kind of a pessimist (I KNOW, shocking, right?!). I prefer to plan for the worst and be pleasantly surprised when it doesn't all head down the toilet. It's hard to remain pessimistic when it's (literally) life or death, though. And because of that, I feel as though I've been blindsided frequently throughout my treatment. Not because my doctors haven't shared their thoughts with me. Because I was unable to see anything less than an idealistic and happy ending.

But maybe that's the trick. Maybe I've just begun to adjust my definition of happy in this situation. In the beginning, happy = alive with my real boob. Now it's just happy = alive with my real boob.

At any rate, here's the update. I have 33 radiation treatments total. I go in M-F for about 15 minutes for about 6 weeks. I'm scheduled to be done late August. I've had many docs tell me that radiation will cook me "like a turkey" (No lie--even the radiation onc. Maybe that's one of the reasons I'm resistant?/sarcasm).

But.

But.

I will survive this. I will regain a sense of normalcy. And I will get my swagger back.

INVICTUS

by William Ernest Henley

Out of the night that covers me,

Black as the pit from pole to pole,

I thank whatever gods may be

For my unconquerable soul.

In the fell clutch of circumstance

I have not winced nor cried aloud.

Under the bludgeonings of chance

My head is bloody, but unbowed.

Beyond this place of wrath and tears

Looms but the Horror of the shade,

And yet the menace of the years

Finds and shall find me unafraid.

It matters not how strait the gate,

How charged with punishments the scroll,

I am the master of my fate:

I am the captain of my soul.

I aspire to achieve this. And e-cookies to those who recognize the line that titles this post (real cookies if I can get them to you)!

~M

The importance of friendships

Some of you might not know this about me, but I'm a pretty big extrovert. Not just in the way that I'm loud, boisterous, etc., but in how I "fill my cup". When I'm overwhelmed or have expended a lot of energy, I need to have interactions with others. Quiet reflection and Mary are not friends--and certainly not now.

Sounds good in theory, but not so much in practice. Mostly because it's rarely quiet and it's pretty filthy. 

So the first recovery period was hard on me both physically and emotionally. The second and unexpected recovery was the hardest yet. Not in terms of pain, but more in terms of solitude. I have been reluctant to reach out to others for fear that people would get sick of my whining. I continue to beat the odds in all the wrong ways and I'm not even sure a soap opera would buy my story--it'd likely be labeled as too unbelievable. 

There's been some legit reasons for my self-imposed isolation: it's tough to hang out when you're doped up on pain meds and sick from chemo; it's difficult to go out in the community when you've got drains in; and honestly--we're in Minnesota. No one sees much of anyone during the frigidly cold months.

An extra tauntaun would be nice in case we need to unexpectedly camp...

But I got sick of my own pity party. I called friends and forced myself to get out into the world and visit with people. I left the cities for the first time since October (huge deal--we used to travel a lot!). 

I realized something last week. Neil and I aren't blessed with having a lot of family, super close. But we are blessed with an awesome bunch of friends who care and support us. I spoke with a friend last week in a similar no-fam-around situation. While some might see this as a curse, I'm choosing to see it differently. This gives us the luxury of building our own supportive, awesome network of collaboration. We've been pretty scared and isolative for much of the last 6 months--which is totally me. I wanted to try to give Neil and the boys as much time with me as possible, just in case I died. I realize now that was wrong. I needed to reach out and accept what you all were offering--your friendship, companionship, listening ears, a drink, a laugh--whatever. 

So, as we roll into the summer, I hope to see much more of all of you. I've always known you guys were important to me, but wish I would've realized exactly how important your friendships are to my healing process before I got so low. 

Thanks so much for your patience and understanding! I can't wait to get back into the groove of seeing you guys more often.

<3,
~M

Mastectomy 2.0

I'm sorry for vague booking this earlier. I've receive value lot of questions and haven't been able to answer them due to anesthesia.

I'll try my best right now. After my last surgery (the official mastectomy), I had an unusual amount of drainage. Most people keep their surgical drains in for 10 days--mine were in for 22. After having them removed, I continued to have significant difficulties with fluid buildup near my faux-boob. I needed to go into the doctor's office to have it removed via syringe. Thank god they severed nerve endings in that area!

Additionally, my blister wounds weren't healing right...taking far too long and just not looking good. So when I went in Wednesday afternoon, my plastic surgeon and the resident suggested removing the injured skin, cleaning out the fluid pocket and then "belts and suspenders" to tack my skin down to my chest wall and remove space for the fluid to accumulate. Altogether, a 20 minute procedure with the largest recovery from anesthesia. This is important because all these factors are reducing my ability to start radiation in a timely fashion because we can't start radiation until they all clear up. We said sure and surgery was quickly scheduled for today.

Imagine my surprise when I woke up hours later. Turns out things weren't so simple. Frankly, things with me are *never* simple. When the docs opened me up, they had an "oh shit!" Moment. Turns out the fluid buildup was larger than anticipated, my muscle had slipped over the expander, a "film" covered everything and the donor material used to support the implant within the expander was not attached to my body. This meant that they had to take out everything and start from scratch. New expander, lots of scrubbing and more surgical drains.

Here are some Platypus babies to lighten the mood.  

 The docs reported it's a good thing we went in for this minor-turned-major procedure though. The second I would've started radiation, the expander would've collapsed, causing me to have another surgery but this time leaving me with no expander or faux-boob (I happen to like having a pair of 'em, not just a single). I'd have to have something called a TRAM Flap. Obviously, not ideal.

So, here I sit. Mastectomy 2.0. Slightly less painful, but a little more grateful.

A Different Neverland

Had my appt with the Radiation Onc today. It wasn't a good one. Based on my path report and regardless of margins, best outcomes are to pursue radiation.

I am devastated. N didn't come with today because his company was purchased recently by another and I wanted to be conscious of his time off. I should've been more concerned with my own damn well-being.

Today isn't a good day. Today I feel like I live in a different "Neverland" than Peter and those upstarts, the Lost Boys. My Neverland isn't populated with fairies and food fights. It's filled with things like: It's never going to be over; there's never a finish line; It's never going to get better; The pain will never go away; you'll never be the person you once were...

I'm faced with a new reality, one I wasn't prepared to step into. I keep thinking that there's a finish line, but there isn't. There's never going to be a reality where I won't be affected by this cancer. Radiation for 6 weeks, expander for close to a year, surgery for reconstruction, surgery again as my body will (likely) reject the implant causing difficulties*; potential for different cancers down the road...I'm not making this up and catastrophizing. This is what I heard today. I never wanted cancer to define my life, but I'm not sure how it can't define it.

I don't want to hear that it will get better. I've heard that time and again...no one has been right yet. I feel like I'm half a person; I'm not able to live the life I want to live and I know I'll never be the same person I was. I desperately wanted to live in a post-cancer world, but today? Today it feels like that's a world that will never exist.

And for all you therapists (and non-therapists): I called someone today.


*From the Radiation Onc, I heard that 1 out of 2 women are somewhat dissatisfied with their reconstruction after radiation and 1 in 3 will need to have additional surgery due to rejection--which ALWAYS happens--it's the 1 in 3 that need surgery because of the complications of the rejection. I'm not just being overly negative here. 

On resiliency

Tomorrow I head in to meet yet another doc--this appt will be to determine whether or not I'll actually need radiation on top of everything else. Because the Onc and Surgical Onc differ on this point, they've sent me to someone else as a tie-breaker. Even though I believe (given the path report) that my odds of surviving 10 years is greater than 85% at this point (and the Surg Onc says that radiation will provide only another 5%), I'll most likely go with the radiation if it's recommended. I continue to be concerned with the quality of life issues raised by radiation, though. Mostly, this is an increase in pain due to the expander remaining in longer as well as cosmetic reasons--which face it, are an important quality of life issue to some people, me included.

I didn't sit down to write much about this, though. In terms of talking about how cancer has affected my family, I generally only talk about the little one. He's at the age where he's not supposed to be as verbal as he is (see the previous entry about my "genius" younger son, LOL), but he does continue to push limits and act out in response to these changes. Obviously, this is normal for his age and this trauma. 

But the biggest little, V--I honestly expected he'd fall apart. Don't get me wrong, he definitely pushes limits (and certainly did during my hospital stays), but...he's remarkably empathetic and such a good listener. He constantly helps with all the things at home, independently and in school? He's in the top of his class!

At the beginning of the year, he had to come up with a goal for himself (and Neil and I had to come up with a goal as well). This was in the early stages of my diagnosis and before treatment started. My (unstated) goal was to make it through his Kindergarten year--just to survive to see it. But both stated goals were the same: We all (independently) wanted to see Vaughn learn to read by the end of his kindergarten year. We live in a very poor district--60%+ students receive free/reduced lunch (this is the standard by which school districts are judged as impoverished). He is in a class that has 24 other students, most of which came into kindergarten only speaking limited English. And this week? This week he started reading books on his own. Despite all the challenges of the year, despite the high needs and high numbers in his class, my son learned to read! We laid in bed and Neil and I listened to him patiently sound out every word and read the sentences by himself--oh how we beamed and praised!

The next day, V turned to me as he was getting ready to go to school and said, "Ya know...last night, I was so proud I almost cried."

Me too, kiddo. Me too.

Ripples

J, my (nearly) 3 year old is a very smart child (aren't everyone's children "geniuses"?). Like a lot of children, he's very aware of the emotional states of those around him, but he's (un)lucky enough to have had a lot of practice in verbalizing them--a pro and con of having a therapist parent, I suppose. At any rate, today he got a small cut on his pinky toe. He cried and cried! It seemed a bit much for the size of the owie, to be quite honest. We fixed it up with a band-aid, provided cuddles and kisses, distraction--nothing worked. Finally, I sat with him in the chair and we quietly rocked. After some time, J who was still sobbing, looked at me and pleaded, "Please don't cut off my owie!" Confused, I attempted to console him and let him know that's not how we fix owies...and then we both looked at my chest.

"Are you thinking about how we cut out Mommy's owie?"

"Uh-huh" came the stuttering reply.

We had a big conversation about how Mommy's owies are different than J's owies. I reminded him that I had cancer--which is different than his owie. We talked about how Moms and Dads fix their children's owies and that we didn't need to "cut" anything off of him.

It dawned on me after this conversation...the cancer may be out of my body, but it's still in my life. Even as I sit here, three weeks post-op, with a drain still in and still struggling to heal my blisters. It's a part of my life and worse, it remains a part of my children's lives. It's a reminder that although I'm a "professional" and I know how to deal with trauma, I'm still just a Mom, trying to help her children make sense of a really, awfully shitty situation.

The big update

So...I am a total jerk and left you all waiting for this update. Sorry.

The smile of a long-winded jerk with big news.

We had our follow up with the surgical oncologist (Dr. Tuttle) & his entourage (Susan--Dr. Tuttle's RN, the head surgeon, Dr. S and a surgical resident, Dr. Elliot) all of which participated in my surgery from the oncology standpoint (I meet with the plastic surgeon next week). Dr. Elliot followed me in the hospital and he and I went several rounds in regards to my pain management. He lacked empathy and I flat-out told him so. Ahh, residents. At any rate, when I saw him start to come into the exam room, I jokingly said he wasn't allowed in--and thus set the stage for one of the funniest doc appts I have ever had.

They asked me how I was feeling. I looked at Susan and Dr. S (who is a female) and replied, "You two will understand this...I feel like I'm constantly wearing an underwire bra and it's the end of the day and you just want that sucker off!" Completely deadpan, Dr. Tuttle replies, "oh god, I hate that feeling!" I softly patted his hand and said, "I shouldn't have assumed...I'm sorry."

During the exam, they were looking at my blisters and remain completely stumped as to why I developed them. I replied that it's not really very comforting to hear so many "I don't know's" and "I've never seen this before's". It's not comforting when google doesn't even know the answer, btw. During this process, Dr. Elliot and I were carrying on a side convo about something when he dropped some huge medical term. "Whoa...that's not even a $5 word!", I exclaimed. "That's more like a "$10 one!" "I know," he replied, "but I feel like I need to show you I know something about medicine!" He said he wanted to put my comments as his fb status but was concerned about HIPPA...thus began my educating my doc on how HIPPA works...very odd but amusing. Dr. Tuttle, Susan and Dr. S just stood by, bemused by the whole interaction.

There was also a conversation about the difficulties of suddenly losing your ability to utilize your dominate hand for specific things, but Neil says I'm not allowed to post that conversation on the internet. Ask me about it in person though--Dr. Tuttle was so amused, he repeated it to others on my care team after our consult. I may have missed my calling as a comedian.

We finally got to the pathology report. The bad news is that the tumor was not 2x3cm (roughly 1x1 inches). In fact the MRIs were completely wrong. My tumor was much larger and closer to 3x1inches (7.7x2.6cm to be exact). That means that we absolutely made the right choice for a mastectomy as that is rather large, even after chemo. I also had a lymph node that was positive for cancer (this is actually not the surprise they expected it to be as we have been aware of this possibility since before teh definitive diagnosis in September).

The good news? There's so much! Dr. Tuttle got "wide margins" of 18mm--this means that there was quite a large amount of space between the healthy, non-cancerous tissue and the tumor. This reduces the chance that I may have to have radiation (still need to do that consult). Also, even though I had lymph node involvement, it was only in 1 of all the lymph nodes they removed (which was 9--a remarkably small number to have on one side of your body--typically, ppl have upwards of 20. Medical oddity once again).

The other piece is we received my Nottingham score. This requires a bit of explaining. The Nottingham (or Bloom-Richardson) score comes with the path report and looks at how the cells of the tumor are under a microscope. IT IS DIFFERENT FROM THE STAGING SCORE!

From here:

..."The Bloom-Richardson system is used for grading breast cancer, and has a scale of 1 - 3. A pathologist will take a sample of tissue from your tumor, and examine it under a microscope. Tumor cells that look most like normal cells are given a low grade, while those that look the most abnormal are given a high grade. High-grade tumors are fast-growing, spreading (metastatic), and aggressive. Knowing your tumor grade helps your doctor decide which treatments may be best for you.

The Tumor Grading Process

A pathologist looks at the tumor cells and checks for three microscopic features:

• degree of tumor tubule formation (percentage of cancer composed of tubular structures)
• tumor mitotic activity (rate of cell division)
• nuclear grade (cell size and uniformity)

Each feature is scored on a scale of 1 - 3.

Cell Feature Scoring

The pathologist will assign a value to each feature of the cells, based on its activity. This is how the scores may be understood:

Feature Score 1: Slow cell growth rate
Feature Score 2: Intermediate cell growth rate
Feature Score 3: Fast cell growth rate

Feature Scores Add Up to Three Grades

The score of all three features are added together for a total between 3 and 9.

Grade 1 is the least aggressive, while Grade 3 is the most aggressive type of tumor.

Tumors that are given a high grade and that contain dead cells (necrosis) are more likely to recur after treatment. High grade tumors will be treated more aggressively than low grade tumors."

Whew...sorry for the impromptu bio lesson, but I feel like it's important. Given all the info we had prior to surgery and treatment, I honestly assumed the worst. I knew my tumor was large and had progressed. We assumed it had grown quickly. I was honestly expecting the worst when it came to my Nottingham Score. Imagine my surprise when I saw the path report--I scored a 3! I feel as though I have won the lottery! This is the best possible score I could have received. I had a slow-growing, well-differentiated and NOT AGGRESSIVE type of cancer. This puts my prognosis at very, very high (there are other variables to consider, but still--this is excellent news)!

This score, combined with the wide-margins means...for all intents and purposes, I am currently cancer-free! And you are all stuck with me for a very, very long time. 

I still have some treatment to go. I will receive a dose of Herceptin every 3 weeks via infusion (minimal side effects) and will probably be adding in Perjeta due to the positive lymph node (the side effects listed are wrong--there are also minimal side effects for this drug). This will be an hour infusion every 3 weeks--a significant decrease from the 4-6 hours every week I would spend on the unit! 

I'm starting to grow my hair back as well! I wouldn't say I'm shaggy by any means, but there's some definite upward movement going on up there. I managed to retain my eyebrows and most of my eye lashes throughout both sets of treatments, but was bummed to see them drop out over the last few weeks. It turns out they were dropping out to accommodate new growth! So, I've got little, tiny eye lashes and eyebrows growing in. Not gonna lie, it looks a little goofy, but I'm glad they're coming back.

Thanks guys. I know I always end this thanking you all. But honestly! The support we have received is just so amazing. Every day at work I see how trauma can be exacerbated by stress. Neil and I are a great team already, but adversity has a way of wearing people down. We have been surrounded by wonderful friends and family who have been there with us, through all of this--we've never felt alone! Your support has made it possible for all of us (me, Neil and the boys) to weather this horrible storm. And honestly--I feel like we're going to be okay because of all of that support. So, thank you. 

Post-op

Well, it's a week and a half and I'm finally starting to feel a little more normal.

THANK YOU to all our friends and family who have called, texted, stopped by and sent food/flowers and love. It's really made the last week and a half so much more manageable.

I'm told the surgery went well. There were no complications with the surgery itself and both the surgical oncologist (Dr. Tuttle) and the plastic surgeon (Dr. Cunningham) we're pleased with how everything went. The day after the surgery, I noticed a sharp pain on my right side (surgical side), but thought nothing of it. Later, I thought I could feel some wetness on that side, but once again, because I was completely numb on the right side of my torso I assumed it was nothing. At midnight, my nurse was examining my surgical site and found a very large blister that had burst on my right torso (about where my elbow would hit). She dressed it and by 6am I had developed another 4 blisters all up my side--about 6 inches worth. The docs were baffled (because once again, I'm a medical oddity). The pain was immense and I was unable to move my arm at all without pulling either a blister or wounded skin--and insult to injury, I'm a righty! But, we saw a wound care specialist(!) and we're still allowed to go home.

While I was hospitalized, J came down with the flu. I was hopeful that I would miss it having spent 3 days in the hospital and Neil sanitizing all the things before my discharge (those of you familiar with Neil's cleaning know how thorough he can be!!). Alas, when it rains it pours...instead of spending the last 10 days only recovering from a mastectomy, I've also been recovering from the flu and the above noted blisters. The flu and blisters have actually been more difficult than the surgery itself in terms of pain and discomfort.

I'm finally starting to feel a little better today. Neil says that my blisters are starting to heal. I can't see them as I'm not allowed to lift. My right arm due to surgery AND because lifting that arm has meant it pulled on the sensitive skin where the blisters have been healing. Because of the pain, it's been incredibly hard for me to text or to talk on the phone. I hope to be able to catch up with you all over the next week as the pain goes down and the healing continues.

Thank you again for all you kindness and care during this time!

Night before

It's the night before I head into surgery. It's surreal to sit here, just a few hours away. I'm both ready and not ready for this.

I'm ready to be rid of cancer. I'm ready to get it out and truly begin healing. I'm ready to be on to the next step in the recovery process.

I'm not ready to say goodbye to my treacherous breast. Despite the fact that it tried to kill me, I'm sad to say goodbye. I am sad about saying goodbye to the future things as well--most likely done with having and nursing children. I'm sad about how my body will look. Despite having one of the best reconstructive surgeons in the nation, it will never be the same. I'm sad at not being able to lift and hug my family for the next month. I'm not ready for the huge surgery and the pain that's coming.

Through all of this, Neil and I continue to be overwhelmed by the generosity and care of others. We are humbled. Another big thank you to all of you for your continued love and care.

Mic Drop

Last week was many kinds of awful. I Vague-booked about the horrible experience that I had at the Plastic Surgeon's office last Wednesday. All of my years of advocating for others gave me the confidence to advocate for myself. The surgical oncologist's RN saw the note and called me up...her first words were "I'm horrified by that appointment. I am so sorry. That said, he will not be performing my surgery. It was nice to be validated.

Friday I went in for my "last" chemo appt. To celebrate the end, we pulled Vaughn out of school, had a great lunch and then headed in for the appt with the idea we would be celebrating that night. I had a good convo with my oncologist. We discussed surgery and the possibility that I won't need 6 weeks of radiation (depending on the surgical outcomes and what they find when they open me up. It comes down to whether or not I have "clean margins". Clean margins = no radiation). Then he pulled up my blood counts. A normal White Blood Cell count is 4.0-11 and normal Absolute Neutrophil Count is 1.6-8.3. On Friday my counts were 1.5 and 0.4, respectively. These are not just dangerously low--they are near hospitalization low. Anything under 0.5 for ANC is close to 30% for severe infection/hospitalization/death from a common infection.

To see my counts the lowest they've been at the very end of it all was devastating to say the least. To have to tell Vaughn that we weren't celebrating was the most heartbreaking of it. I lost it. Vaughn lost it. I broke down in the office. I am not ashamed to say that I begged my doctor to let me continue anyway. To have it put off again was one of the most difficult things to go through in all of this. Dr. Yee was empathetic to the situation but firm--too sick to continue. He offered me choices, though: I could say no thanks to my last treatment; I could have two shots (one on Friday and one on Saturday) in an attempt to boost my counts and try to have chemo on Monday. As much as I have wanted to be done, I knew that I would be unable to live with the guilt and fear of not completing my cycles. So I did the shots.

We showed up to the clinic on Monday filled with trepidation. We had been burned too many times in this to expect that my counts would be high enough to continue. No meeting with the doc, just straight upstairs to infusion. Because my counts were so low on Friday, the lab had to manually count my ANC on a slide. The results came back and my WBC count was 19.9! My ANC was also extremely high (can't quite remember). The nurse was impressed! So, I had my last round yesterday!

Look at our shiny heads! 

Celebratory cupcakes (the boys picked them out)

So now we wait for surgery. It's been scheduled, rescheduled and rescheduled again. It's finally been set for Monday, April 7th at ass-o'clock 7 o'clock in the morning. More details in another post, including a link for signing up for meal deliveries for interested parties (NO OBLIGATIONS!). 

So, on that note, we close the chapter of chemo. Mary OUT. 

Game on?

Went to the doc on Friday in the crazy aftermath of the 9+ inches of snow and ice. Despite fighting off the flu for the past few days and still not being able to hear out of my ears, I had chemo.

I look tired. I am tired. I'm really tired of being sick. I spent most of yesterday fighting off pretty significant nausea despite tons of meds. I am supposed to take the shot to increase my white blood cell count, but I just couldn't stomach the idea of feeling more awful. I know it's a risk but I am willing to take it. I'm still in negotiations with my Onc about whether or not I'll have the last AC round before I go to surgery. 

Last time I updated, I said I needed to find space to grieve. It's been hard to do that for a number of reasons. First and foremost, the kiddos have been sick (and so have I), so there's been a lot of extra caretaking going on. Secondly, I'm not sure exactly *what* I'm grieving. I don't have very many specifics about my surgery and I won't for a few more weeks--until I meet with the plastic surgeon. Once I know the extent of his portion of the surgery, I feel as though I'll have a better idea as to my next steps. 

I have made some progress, though. I know that after my surgery, I'll be laid up and unable to play or actively participate for awhile. I had a dose (as did Neil) of what that will be like when I was out for the past 3 days fighting off the flu/nausea. It was hard to hear the boys playing with Neil and asking to play with me but literally being unable to get up to interact with them. V cried last night when I couldn't put him to bed. We came up with a suitable fix and he fell asleep on the couch while I laid here. J needed some extra cuddles last night, too. So, I was glad to be able to spend some cuddle time with each boy despite not being able to actually play with them lately. 

At any rate, I'm so glad for all of you. Everyone who takes the time to read this, who checks in with us and who generally thinks about us and helps out in all the ways you do. Gina--for coming with me and holding me while I cry in the doctor's office. Christina, Melissa, Krista, everyone...for seeking me out at work to check in. Shannon and Ryan for texting. Everyone for your kind FB msgs all the time. Rosemary, Tod, Colin and Sky--all the awesome hats!!! They've been fantastic, especially during this "polar vortex". Of course, my Mom as well--she's frequently come up to help take care of the boys and is planning to come up when I'm recovering from surgery. 

I'm sorry if I am forgetting anyone. I'm not trying to leave anyone out. I love you all. 

AND Neil for everything! For being both parents and caretaking me as well as the boys, and the house and all the things! 

I appreciate each and every one of you. I really hope you all know this. <3 

Surgical dates and all the feels

From the start of this, I knew better than to become married to the idea of a specific end date. So many things about cancer remind me of being pregnant. They seem so analogous on the surface: showing, ambiguous end dates, the idea that you're changed forever once it happens.

Before we walked into the office yesterday, I knew what the doctor was going to say. He listened to my lungs, listened to my chest and officially declared me "too sick" to have chemo this week. Despite my white blood cell count coming back ridiculously high (WTG, body! Working hard despite all the stresses) it just wasn't a chance he wanted to take. So between the cold and my newly diagnosed and rare hand-to-foot syndrome, it's pushed back until next week...which means my end date for this round is also pushed back. It was devastating to hear that my end date was changed. I so badly want to be done with this and move on to the next wave. I'm done with feeling awful due to the "treatment".

Speaking of next wave, I have a surgical date for my mastectomy: March 25th. I plan to work right up until that date, in order to preserve as much of my FMLA time as possible. The doctor anticipates that I'll be out for 2-4 weeks (mostly due to heavy lifting restrictions at my work). I haven't properly grieved the fact that I have to have this surgery. I've been informed by my clinical supervisor at work that I really need to do this. Sometimes, I feel as though being a therapist hinders my own ability to appropriately express my own feelings. It's just become such a habit to sit with them briefly and then tuck them into my back pocket. I'm so busy trying to function: as a wife, as a mom, as a therapist--I don't have time to sit in my fear and anger and sadness. Which is such a disservice to myself and my family! So, my goal for the next week is to find some time to sit in my feelings and to allow myself to feel all the feels about how much this situation truly sucks. If I don't, I don't think I'll ever truly heal from this. And, in the end, I'll do the social worker re-frame: I'll try to find the positive in this situation.

My Many Colored Days...

"My Many Colored Days" is a Dr. Seuss book that I sometimes use in therapy with kiddos. The book uses colors as a medium to talk about feelings. Today (and yesterday), I've been feeling a little brown:

It's been 4 months of chemo and 5 months of this diagnosis. I usually am pretty upbeat about the process and everything that's going on (it's hard to remove the therapist from the person) but some days are just brown. And shitty. And that's okay. 

We met with the surgical oncologist yesterday. We got the definitive word: I'm having a single mastectomy with "immediate"* reconstruction. I think Neil and I were holding out hope that I might have a less extreme surgery, but according to Dr. Tuttle my tumor is just too big and pervasive. So, just when Neil and I thought we were almost done, we find out that there is 9+ months left to go. The rough timeline looks a little like this: chemo ends 2.28. 3-4 weeks later (end of March/early April) I go in for surgery. 4-6 weeks of recovery from surgery with limited ability to lift more than 10 lbs. 6 weeks of daily radiation. October/September/November time frame: reconstruction. And somewhere in here, I'll start the 9 months of Herceptin (every 3 weeks I'll have to receive this infusion).

When Dr. Tuttle broke the news he literally said, "I'm really sorry. You were dealt a shitty hand."

Seems like the brown description was more than fitting, Dr. Seuss...

Today has been better. Despite being horribly sick** I've had a chance to get some distance from the news and begin to process it. There's nothing I can do but continue to plod this race. Instead of running a sprint we are coming to terms with the idea that this is a triathlon. Right now, I'm going to focus on the end of this portion and the beginning of the next (surgery). Once I get through this, I can focus on what comes next. And through it all, continue to sit through all my colored days...even the shit-brown ones.



*Immediate reconstruction is such a freaking misnomer. I can't actually have the implant until 6 months post treatment. I'll have a temporary implant in the meantime. So yay, two surgeries. :( 

**When you have a cold on chemo, it's a really big deal. Like, huge. I was told to go to the ER today despite having nothing more than a cough, congestion and sore throat. No fever. When you are on chemo and you get sick, you can go from fine to hospitalized rather quickly. So getting sick on this end of it is a huge deal. Thankfully, I literally only have a crappy cold and should be better soon. Hopefully this doesn't impede my next treatment. 

Halfway to the halfway point?

I had my 2nd of 4 treatments yesterday. I think Neil and I were both expecting it to be more of the same: foggy-head, achy muscles, overly tired...We have both been pleasantly surprised thus far! I haven't been overly tired nor have I experienced the fogginess that came with the last round. There were some slight changes to the med regimen that may account for this, and if so then I'm going to request a permanent change. I suspect the achy-ness will come as the shot works it's way through my system and encourages my bones to make more white blood cells. But if that's the worst of it, I'll survive!

I titled this post "halfway" because we honestly don't know what is happening after this round. I'm due to have surgery (and I find out what and when next week). Recovery could be anywhere from 2-6 weeks, depending on type of surgery.

I also finally received my genetic testing results. I have no genes* causing my breast cancer. This means that I likely fall into the category of "Familial Cancer" where some genetics and environmental factors come together to create the cancer.

On the work side of things, I've finally "graduated" from my day treatment classroom. I'm officially, solely an outpatient clinician**! I'm excited to move forward with the next phase of my career! I'm also far over my necessary hours to take my licensure exam and am planning on turning in the paperwork to complete that process! 

*Of the genes tested. There are millions of genes and environmental factors and I was only tested for the 6 most probable causes of breast cancer--two of which were the "Angelina Jolie" genes, BRCA 1 & 2. 

**For the time being. FMLA and this current bout of treatment have made it unlikely that I could continue as a day tx clinician. After tx has ended, I *might* have to return to a day treatment classroom, but this is clinically inappropriate as well as unfair for my colleagues. As for now, I'm an outpatient clinician and I won't know anything different for a few months. Cancer: life, ambiguous! 

Momentary Pause

I didn't sleep well last night. Since this whole thing started, I've had a much tougher time falling or staying asleep. This morning, after tossing and turning (and having J toss and turn with me all night--Neil had long ago departed for the couch in search of more restful sleep) I stumbled downstairs to see the morning. Neil and I sat in the living room, drinking tea and enjoying the quiet start to the morning. Today has been different. There was no hustle and bustle of trying to get everyone up and out the door for school and infusion. There was just quiet reflection and enjoying each other's company while waiting for our little world to wake up. Today was different because for the first time in 3 months(!) I didn't have to hurry to a doctor's appointment*. 

Last week, I started the 2nd round of my chemo. The first 4 days were every bit as difficult as I thought they'd be. Friday-Monday saw me the most tired I've been in 3 months. The neulasta made me ache in unexpected ways. Mostly, I just felt like it was too much work to lift my legs--I felt similar to having a tough leg workout. I was living with a constant fog in my head; just too hard to think concretely about anything for an extended period of time. Tuesday felt a bit better and by Wednesday, I felt pretty normal. I could walk without feeling like I had run a 1/2 marathon, my head was more clear and I actually had some energy again. Now, here I sit a week out and I'm feeling pretty good. 

This is tenuous, though. While I appreciate the momentary pause between treatments, I see how hard this extended break can be, too. When you go every week, you have a natural cycle that ebbs and flows. You become accustomed to the rhythms of chemo and recovery. There's not a lot of time to feel "normal" or "well" before you get right back to it. With this round (and this week in particular), I have enough space in between rounds to feel normal and to actually begin to dread the next session. Two weeks is a long time in cancer-world. It's just long enough for me to get accustomed to feeling well and begin to buck against what I know to be inevitable. I don't want to go back to foggy-can't-move-my-legs-Mary. I know, though, that this uncomfortable-ness is really only short-term. I can see the end of the road and March is really just around the corner. In some ways, I feel like it's pretty fitting that I'll be ending my treatment just as the winter is ending. I've always enjoyed Spring the most and it feels pretty hopeful that this is the season that will be greeting me at the end of this series and surgery. 

<3

~M

*Side note: V's school was off today due to teacher grading day, so it was doubly nice to move at our own pace for once in the morning. Also, Neil and I have continued to partner with our employers to continue to work from home (him full days and me 3 hours on Fridays), even on the days I don't have chemo. 

Rapunzel, Rapunzel

Let down your hair…

There is a hauntingly beautiful photo series called "Fallen Princesses" by Dina Goldstein. In it, she explores princess culture and how "happily ever after" is a false concept. She portrays popular princesses following the "credits"…Belle obsessed with maintaining her beauty utilizing plastic surgery, an obese Little Red and Rapunzel losing her long hair as she battles cancer.

Tomorrow I start my next round of chemo. But today? Today I'm in charge of my own life. Today, Neil and the boys came with me to the salon. I met with a lovely woman named Jenny and she kindly (and empathetically) helped me by shaving my hair.

Julian was mercifully distracted by another stylist, while Vaughn played a game on my phone. Neil stood next to me and held my hand. When it was done, Julian looked over…his lip quivered and he said, "Mommy…?" I grabbed him up and gave him a hug, reassuring him as much as I could. Jenny asked Julian if he wanted to come with while she washed my hair. So, off the three of us went. I grabbed him and held him in my lap as Jenny gently washed my newly shaved head. He looked up, brushed his hand against my head, looked me in my eyes and quietly said, "You're beautiful, Mommy!"

And that's when I knew that no matter how much this sucks, I'll be okay.

~M

On our way to the finish

I'm absolutely horrendous about updating this. Not for lack of thinking about it--just for an inability to sit at the computer and actually get a second to type it all out.

I had my 11th treatment last Friday. This Friday (1.10.14) marks my 12th and final treatment in my first round. 1.17.14, I start the next round of treatment, generally known as the "A-C round" for the two drugs I'll be given: Adriamycin and Cytoxan.

I saw the doc last week. He said to me, "I know I say this every week, but you're hair! ((dramatic pause)) You know you aren't going to keep that through the next round."

Gee, your bedside manner is overwhelming with empathy. I'm not mad at him for stating the obvious fact though--it's pretty remarkable that I've retained my hair thus far, but my luck is about to run out.

At first, you may all be wondering about the fuss surrounding hair and cancer. But think about it--when you think about what cancer looks like, in your mind's eye you see an emaciated person with a bald head. Cancer doesn't have many outward signs. Most of you see me day to day and I look pretty healthy (maybe overly-healthy--I've had a few snacks too many this round and probably before). When I do finally (inevitably) lose my hair, it will be the first real and outward sign that I am sick. You can't escape it. It's like being pregnant. The first few months you can get through life without too many questions, but once you start to show, everyone knows with just a glance.

My boys are aware of what's going on (V obviously more than J due to age) but I'm trying to figure out how to be an attachment-based therapist without forming new attachments right now. It's a struggle to figure out the boundary between reciprocal sharing for therapeutic rapport and sharing for your own benefit. Right now, I'm keeping the info to myself. I guess I'm waiting for the critical "showing" phase of cancer treatment to come up on me before I tell the families and kids I work with. So, if anyone has any ideas on how to be a Clinician who is sick and still working, I'm all about hearing it.

To go back to the beginning of this entry (you know, where I talk about how awful I am about updating)...it's taken me 3 days to write this.

Hope the holidays have been kind to you all and the new year is amazing!

<3,
Mary