breast cancer, family, kids, life, Uncategorized

Heartbreak

This morning, AJ asked me a question.

“Mommy…the medicine you’ve been taking. The one that made your hair fall out and made you feel bad. It’s going to make you all better, right? I know you have to take a lot of medicine for a long time, but it’s going to make you all better, right?”

All I could answer, “I hope so, baby. I hope so.”

And then, I cried, but not where he could see.

 

Advertisements
breast cancer, life, Uncategorized

Numbers

Before I was diagnosed and in the we-don’t-know-what-that-is-we-need-more-testing phase, I remember sitting in my car in the parking lot of my obgyn’s building. I’d just left her office with orders for a mammogram and ultrasound. I was on hold with the imaging center and was silently crying. In my head, all I kept thinking was “I don’t want to be a statistic…I don’t want to be a statistic.” Of course, we know how that worked out for me.

I remember crying on A’s shoulder right after I was diagnosed and saying I was statistic. He looked at me and said, “You’ve been a statistic since you were born,” which is true, but I didn’t want to be this kind of statistic. I didn’t want to be the 1 of the 1 in 8 women. I had a .4 percent chance of developing breast cancer at 37 using the NCI Breast Cancer Risk Assessment Tool. Yet, here I am.

My attitude over the last week has become “it is what it is.” I’ve also started automatically answering “I’m fine” or “I’m ok” when people ask how I’m doing. I did that to my childhood BFF on Friday, and ooh, the glare I got from her. She knows me better than that. We’ve been friends since we were five (yes, really…we met in kindergarten), and when I said, “I’m ok,” she glared and said, “Ok. Try again. Those of us who love you know you better than that and want the truth.” So, I told her the truth.

On Friday, I was brooding over a decision I’d made Friday morning at the radiology oncologist’s office.

When I saw Dr. D on Thursday, he presented us all the options, but he left one thing up to me: did I want to opt for radiating the internal mammary lymph nodes?

I decided yes, I did want that option because I want to be as aggressive as I possibly can. And, at my follow up with him on Friday morning, I told him yes. Then, we did mapping and simulation. 28 sessions of radiation begin either Tuesday or Wednesday. Dr. D told me he wants some extra time to really fine-tune the radiation since I’ve opted for internal mammary lymph node radiation. See, here’s the issue. My breast cancer is left sided. Those lymph nodes sit right behind my sternum. Guess what’s on the other side of those lymph nodes? My heart. Yeah. There’s a chance of damaging blood vessels leading to my heart. There’s a chance of damaging my heart. Being aggressive means radiating those lymph nodes. So, now, I can add a statistic for heart damage to my growing list of numbers.

I already have a 2-8% of damaging my heart with herceptin. But, I want to live. I want to give myself every chance to see S and AJ grow up and to spend more years with A. In order for that to have a chance to happen, I have to take herceptin for at least 1 year, I have to do 28 sessions of radiation, and I have to take an estrogen blocker for at least 5 years, if not 10 years.

I’m not making these decisions lightly or without research. I’ve read the NCCN’s Patient’s Guide to Stage 1 & 2 Breast Cancer. I’ve read the ECC 2013 study on radiating the internal mammary lymph nodes (IMC-RT). I’ve read study presented at the 51st ASTRO meeting. I’ve read the article that appeared in the Journal of Clincal Oncology November 2015. I’ve read the article on breastcancer.org about IMC-RT. I’ve read the article discussing study results of IMC-RT in the July 2015 New England Journal of Medicine. I’ve read the study results presented in the June 2013 International Journal of Radiation Oncology. I’ve read the study results presented by Romestaing. I read and read and read. I probably read about the same study multiple times. I really didn’t make my decision lightly.

That doesn’t mean I like my decision.

But, I want to be aggressive.

And, I know I can be aggressive and do everything “right” and still die from this breast cancer.

So, here I am.

breast cancer, life, Uncategorized

Expectations versus Reality

I met the radiation oncologist, Dr. D, today. Dr. D was very forthcoming and no nonsense. I liked him. I appreciated his manner. Also, he works closely with my breast surgeon. I like having a close knit medical team that works together on my behalf.

Radiation prework starts tomorrow. I have to go in for mapping. Apparently, they’re going to do a limited CT scan of my chest in order to set the radiation plan specifically to my needs. Part of me was a little disappointed. I guess I was hoping someone would say radiation isn’t necessary, which was a stupid thing to hope. The one thing I DO NOT WANT to happen tomorrow is for anything unexpected to show up on the CT scan. DO NOT WANT. CANNOT HANDLE MORE SURPRISES.

Dr. D insinuated it was possible that before chemo, more of my lymph nodes might have been involved. I didn’t like that insinuation. Sure, maybe he’s right, but I didn’t need to hear that or have that put in my head. Dr. O and Dr. H never thought the cancer was in my lymph nodes, and yes, it was, but I’d like to believe it was only in those two sentinel nodes, and those nodes did their job. They trapped the cancer and kept it. The cancer in them was the ER+, not the HER2. I guess that’s why I want to believe the cancer wasn’t in more nodes.

Anyway…

The radiation schedule is for 28 sessions starting next week. I’m glad it’s starting quickly. I didn’t want there to be a gap. I just want to get this over with and done. I want the five and a half weeks of this treatment to go quickly. I want to luck out and have limited skin reactions and just be done.

After I saw Dr. D, I saw Dr. H, my breast surgeon. She was pleased by how I’m healing. I told her I’m having a lot more pain in my chest since the expander fill on Wednesday. My chest muscle hurts. My skin hurts. The expanders are full…completely full, so that’s why I’m experiencing discomfort. Seriously, it’s so uncomfortable right now. I’m so uncomfortable right now. I also told her there is a spot under my right arm that constantly feels like it’s burning. She looked at it and believes it’s a nerve thing. She said if it’s not better in a few months, we’ll revisit it and consider doing something to help it.

The one thing Dr. H told me that I felt was good news was something A and I had talked about since my appointment with Dr. O last Friday. There was a complete pathological response to TCHP. There was no HER2 cancer left behind at all anywhere. Dr. H said it’s good to know there was a complete response…that the tough chemo regiment was worth the misery. She’s right. It was. I just wish they’d found the ER+ cancer during the biopsy so I could have been in treatment for it, too. But, it wasn’t. So, it is what it is.

As much as I wanted to go back to work on the 29th, I’m not. Between the surgical pain I’m still experiencing and beginning radiation, I feel like I need the time. Dr. H highly suggested I take the time I’d scheduled to be on leave instead of returning early and using the time to truly heal and gain some more stamina. She guessed (correctly) that I’m struggling some with post surgical fatigue. I am. She also lifted most of the restrictions on my left arm and wants me to start using it more while watching it closely for signs of lymphadema. So, I’m going to work on my left arm more.

My expectations for this surgery, this journey are not matching reality, and that’s hard for me to admit. I have to get over it, though.

breast cancer, Uncategorized

Just Whining

I’m exhausted and in pain tonight. I shouldn’t be as exhausted as I am. I slept my afternoon away.

I saw my plastic surgeon this morning for my three week post-op appointment. He said everything looks good and did the final fill on my tissue expanders. The fill hurt. It’s obvious the expanders are full. Tonight, I’m in pain from the fill this morning. Yes, I can manage it, and I will. It’s just one more thing  for me to deal with that I don’t want to deal with anymore.

I see my breast surgeon tomorrow afternoon for the first time since I was released from the hospital, and I meet the radiation oncologist tomorrow afternoon. I’m not looking forward to my appointments tomorrow simply because I’m tired of dealing with this crap. Surgery was supposed to be the ending of the road, not a detour to another long road.

I know most of the way I feel is because I’m tired tonight and because my chest hurts tonight, but at the same time, it’s not just because of those reasons. I really thought this road was coming to somewhat of an end. And, it’s not. So, I’m tired tonight. I’m mad tonight. I’m sad tonight.

I’m all the emotions tonight.

family, life, Uncategorized

38

image
From Someecards….no infringement intended

I’m 38 years old today. I never gave much thought to the idea of turning 38. I figured it was a given I’d see 38…39…40…years old and beyond. My grandparents and half of my great grandparents lived well into their late 80s and 90s. One of my great-grandmothers lived into her 100s. I just figured it’d be a given, knowing my grandparents and great-grandparents, I’d have a long life.

I don’t know that now. 38 seems precious. Will there be a 39 and beyond? I don’t really know, but you know what? I shouldn’t have ever thought to take any of it for granted. We’re not promised tomorrow. We’re not promised anything beyond what we have right now.

And, despite everything that’s happened over the last six months, my right now is pretty damned good. I have a husband who loves me unconditionally. I have two children who light up any room they’re in with their love for life, for each other, for just being who they are. I have parents who love me and do just about anything they can to lighten our burdens. I have in-laws who have never treated me as a daughter-in-law (or sister-in-law, niece-in-law, granddaughter-in-law), but instead treat me as a daughter (or sister, or niece, or granddaughter), and, like my parents, would do anything to lighten our burdens. I have aunts, uncles, and cousins who step in at anytime and who love me for being me. And, I am blessed to have friends who are my second family. Who call, text, check in, leave voice mails, show up, and are there not because they’re bound to me by blood but because we are bound together by choice, respect, love, sarcasm, and a deep appreciation for the irreverent.

I’ve never been one to make a big deal out of my birthday, and I won’t change that now just because I don’t know what the future holds. I never knew what the future held. I just assumed I knew. What I will do is treasure 38 and hope there are more to come.

breast cancer, family, life, Uncategorized

Why do you think this happened?

Since I was diagnosed, people have asked me why I think this happened or what I’m going to do to prevent a reoccurrence. Honestly, I tend to give them a blank look when asked either question. But, inside, I wonder the same things. I’ve done genetic testing. The results showed no genetic predisposition to anything we can currently test, which surprised me. I didn’t expect a genetic predisposition to breast cancer, but I did expect something to show up simply because…why not?

Just about the only answers I can give are “I don’t know” and “Whatever my doctors tell me to do.”

I’ve had people tell me I need to start using essential oils, switch to the nutritional MLM they sell, eat only organic, eat more kale and other “superfoods,” add pick-a-supplement, and to question everything my doctors recommend (because my life is apparently an episode of the X-Files?). I’ve found this is similar to being pregnant where people give you advice or ask questions they would never otherwise ask. Sometimes it’s so outlandish it’s entertaining. Other times? Not so much.

The simple truth is:

Could I be healthier? Yes.

If I were healthier, would this have happened? I don’t know.

Do I blame myself? Yes.

Should I blame myself? I don’t know.

I feel an enormous sense of guilt for having developed breast cancer at my age, and yes, I do wonder if this would have happened if I’d eaten better…or used better skin care products…or taken supplements…or eaten more organic…or any other thing someone has suggested to me. But, I didn’t, and this happened, and while I feel guilt, I also believe if this was going to happen, there’s nothing I could have done to stop it. Call it fate, call it destiny, call it whatever. If this was what was written in my stars, there’s nothing I could do, and I accomplish nothing but hurting myself by blaming myself.

A friend sent me a FB message today and told me that this is not my fault, that I didn’t do something to deserve this, and I cannot blame myself. I love her word choice…deserve. I really do because she hit the nail on the head. That’s been my question sometimes to A, in those darkest moments of despair. What did I do to deserve this? And, the answer is…nothing. No one deserves this. It isn’t a punishment. It’s a biological dysfunction.

She’s right. This is not my fault. Maybe I could have done things differently, but then again, there are people who live the healthiest lives they can and end up on this same roller coaster.

My aunt tells me the same thing. She gets super mad at me when I go off on a this-is-my-fault tangent. The last time I went off on a this-is-my-fault tangent, not only did she (lovingly) rip me a new one, but then she called my mom (her sister) to let my mom know (and, yes, my mom joined her sister in a THIS IS NOT YOUR FAULT! I DON’T WANT TO HEAR THIS FROM YOU ANYMORE! pep talk). Some days I need tough love, and there are no better people at it than my mom and my aunt (and one of my best friends, if truth be told). They’re very good at sensing when I need a hug and an “I love you” and a “we’re going to get through this” versus a whack on the back of the head and a “stop it right now and let’s figure this out.”

I don’t know why this happened to me. It just did. Make whatever assumption you want. I’m just here trying to make it through everyday as best I can, the only way I know how. I go minute by minute when it’s too hard to go five minutes by five minutes when it’s too hard to go hour by hour when it’s too hard to go day by day. That’s my mom’s philosophy, and if there’s anyone on this Earth that exemplifies making it through and living in the face of circumstances that would knock most people off their feet, it’s my mom. Most people would throw their hands up in defeat if they had to deal with the trials and struggles my mom has dealt with over the last two years. Not long ago, she told me her attitude has become, “Oh yeah? What else you got?” I asked her to stop throwing that challenge out because fates bigger than us keep accepting her challenge. 🙂

My mom has taught me when day by day is too hard, we go to a manageable unit of time, and if that unit has to simply be one minute by one minute, that’s ok. We’ll build it up from there. But, we get through. Minute by minute to five minutes by five minutes to hour by hour and beyond. That’s how we get through the hard stuff, and by now, my mom is an expert. So, that’s how I get through this.

That, family, friends who have become family, and by holding A’s hand.

image

breast cancer, Uncategorized

I hate surprises

I hate surprises. I REALLY hate surprises. I hated them before this crap with cancer started, but now, I really, deeply loathe them.

I saw Dr. O today, and my concerns were justified. Dr. O requested some additional testing on the pathology, which she told us today, and to say the additional testing revealed a huge surprise is an understatement. In fact, that’s the first thing she said when she walked in my exam room: “Well, we got some surprises, didn’t we?”

We (A was with me today) thought she meant the fact there was cancer left in the breast and cancer in the lymph nodes. Oh no, that’s only part of what she meant. She told us she requested additional testing on the pathology, specifically the receptor status, and that’s the surprise.

The cancer found in the removed left breast and lymph nodes was not HER2 positive. In fact, there was no sign of any HER2 cancer left. What was left was estrogen positive.

The core biopsy never revealed ER+ cancer. It showed strong HER2+ cancer. Yet, some parts of the tumor were ER+.

So, now I’m on tamoxifen and herceptin.

I can’t even articulate how mad, scared, and shocked I am by this surprise. The good news is it’s an extremely slow growing ER+ cancer that was found in the parts removed, and it’s the same grade, Grade 2, of aggressiveness as the original HER2+ cancer was, and it didn’t change the final staging from Stage 2A. So, yeah, that’s all good and stuff, but…

Haven’t we had enough surprises? Seriously, isn’t enough, enough? I’m so sick and tired of surprises, of being a constant source of worry for those who love me, of being angry and scared, of wondering what’s next, of blaming myself.

When I went for infusion today for herceptin, my chemo nurse was one I’ve had several times, and she could tell A and I were upset by something. So, she asked us what happened. I told her, and I told I feel like the deck is stacked against me and that, at this point, I wonder if I’ll be alive to see my 40th birthday. She gave me a huge hug and a bit of hard, motherly love, too. She talked to us about how lucky we are this happened now instead of years ago when herceptin and tamoxifen didn’t exist or were still in clinical trials. She talked to us about dealing with the unexpected and moving on from it.

I know she’s right, yet still…at some point, enough becomes enough. I hate surprises. I want to be done with surprises…good, bad, indifferent. I don’t want anymore surprises.

I hate them.

breast cancer, life, Uncategorized

Slowly building stamina

When we knew surgery would be unavoidable, A told me he’s glad I’m (usually) a fast healer. Of course, he based that entire assumption on my two c-sections. I did bounce back from those pretty quickly, but then again, I also had two newborns, both with some pretty nasty digestive issues who needed my full attention (S had severe GERD; AJ had a protein intolerance to diary and soy products. Thankfully, AJ outgrew his protein intolerance, and S now just has occasional reflux). I was also nearly a decade younger. I was 27 when S was born and 30 when AJ was born. I was in better shape. I had more stamina. Granted, I was exhausted from caring for newborns, but I shared that with A and our parents who helped as they could.

With this surgery, it’s not that I’m exhausted all the time, it’s that my stamina is less. I’ve transitioned to sleeping on the couch, and for the last two nights, I’ve slept better, which helps. But, what I’ve found is I have about two…maybe three good hours of active stamina and wakefulness and that’s it. After that, I have to rest. My body gives me no choice. I can sit and try to work on my Thank You cards, and I can get a couple done, but then my right arm reminds me it had lymph node surgery as well and needs to rest some, too. My left arm laughs at me. Often. It feels tighter, and not in a good way. The day after surgery, I could lift my left arm straight over my head. Now…I can’t. Not exactly. It stays at an angle. So, I’ve started doing finger crawls with it. I push myself just a tiny point past the tightness into uncomfortable and painful, but I don’t push it to the point of my arm yelling WHAT ARE YOU DOING YOU FOOL? at me. I also do what the physical therapist called chicken wings. Basically, I put my left hand on the back of my head so that my arm is elevated and bent and bring my elbow in and out. It stretches the tightest part of my left arm. The stretches help.

My left hand tingles and feels numb sometimes…it began this weekend. I’m hoping that isn’t the beginning of lymphadema.

I want to go back to work, but at the same time, even I can admit I don’t think I could handle it right now. I’m ornery and cranky and annoyed by the fact I’m not able to do everything I want or think I should do. A tells me I may feel stronger, but that’s also when I’m more likely to hurt myself. I don’t want to admit I have limits. And, he’s afraid (and to an extent, so am I) if I go back to work before I’m really ready and released from restrictions by my surgeons, I could injure myself. My doctors suggest I wait one more week. A knows (and so do I) that once I’m at work, my attention is pretty much completely on the kids. I don’t really think about whether I should be lifting a stack of stuff (books…papers), standing out in the hallway where I could be run into by any number of students (which actually happens more than you’d think and nine times out of ten, it’s my fault), or any other number of things that could happen on a daily basis on a large high school campus. So…here I sit. I have to recognize I’m not healed. Not enough to be back to myself. I don’t like admitting that, but it’s the truth. I’ll be back soon enough. If I’d had the DIEP reconstruction, I wouldn’t be back at work before March 14. Since I didn’t, I’ll likely be back by February 29. It all depends on my appointments over the next week. I’m trying really hard not to think about seeing Dr. O tomorrow. I just don’t expect her to be as positive.

Physically and emotionally, I’m slowly getting back to myself. I’m just not there yet.

breast cancer, family, kids, life, teaching, Uncategorized

Expect some Discomfort

“Expect some discomfort.” Those are the words of the nurse at my plastic surgeon’s office during today’s follow up. The good news, they removed my remaining drains (thank GOD). Then, the nurse added some saline to my tissue expanders. I asked her if I’ll be able to sleep on my stomach again (finally), and her response was, “Uhhh…maybe? You might find it uncomfortable. The tissue expanders aren’t exactly soft. Maybe get a body pillow.”

Okay.

So, my mom went to Target and bought me a body pillow. We’ll see how it works. I’m just glad the drains are gone. Yesterday, I lost it over them. I was so tired of the pulling sensation and discomfort from them. I was also exhausted. Frustration and exhaustion are not a good mix for me. I’m hoping I sleep better.

Dr. L told me today that the earliest reconstruction will happen is late June or early July. At least it’s during the summer, and I won’t miss more work. I feel bad for S and AJ, though. We typically spend several days a week at a local waterpark where we have season passes, and I don’t think I’ll be able to take them much. They’ve handled all of this so well, and to me, it’s so unfair they’re going to miss out on one of their favorite summer activities because I’m having more surgery. And, while I may be glad I won’t miss more work, I’m not happy I’ll be limited with what I can do with my kids this summer.

I’m getting nervous about seeing my oncologist on Friday. I really don’t think she’s going to be as positive about the pathology report. I expect her response to be guarded, so I guess I feel like I have to be on guard, too. Now that I feel like there’s some hope, I feel like I have to guard myself against bad news. Maybe I’m wrong. Maybe she’ll be more positive than I’m expecting. We’ll see.

I have so many doctor appointments over the next week and a half. I saw Dr. L today, and he wants to see me again next Wednesday. I see Dr. O this Friday. I see Dr. H next week, and I see the new doctor, the radiation oncologist next week as well. I’m really hoping the appointments go well, so I can be cleared to go back to work. I miss my job. I miss my coworkers. I miss my students. I miss the work.

I’m not a good stay-at-home person.

There’s been a lot of discomfort the last few weeks, and while I saw a light at the end of this tunnel not that long ago, I don’t see it now. I really don’t. Last night, I told A that I feel like this is never, ever going to be over, and I believe that. Even if everything goes right over the next couple of months, I’m always going to be shadowed by the threat of this cancer coming back. No, I don’t want to live my life in fear, but I’d be stupid if I didn’t recognize it’s going to be there.

 

family, life, Uncategorized

Do you realize your birthday is next week?

I  feel like I need to make a Nic Cage “you don’t say?” meme and carry it around with me for the sheer amount of times I’ve been asked that question this weekend. Then, it’s followed by my all-time favorite question: What do you want for your birthday? I hate that question. 😀 My answer always annoys my family because it’s the typical answer: I don’t know…nothing really.

image
Not mine. Someecards. No infringement intended.

My birthday is next week, next Monday, to be exact, so naturally, our family is bugging A to find out what I want for my birthday. He cornered me Sunday (like it’s hard to corner someone who’s pretty much stuck in a recliner or on the couch) and asked me for a list. My list made him tear up, which doesn’t happen often.

What do I want for my birthday? I already got it. I’m alive to see 38. If you really want, bake me a tri color cake and some tri color cookies and decorate the house in purple and blue with some pretty flowers. Celebrate the fact I’m alive to see 38.

Everything else is just trappings.