The First Part of The Story: Cancer In My 30s

I recently wrote a guest post for my friend Shawn Albright's blog. I discuss facing cancer as a parent of young children and the importance of embracing our "stories." Head over and check it out in it's original form. Take a look at Shawn's posts while you're there -- it's good stuff! Full disclosure: Shawn was my senior prom date (just friends) but I promise that doesn't bias my opinion about his writing. ;)

http://www.shawnalbright.com/guest-post-first-part-story-cancer-30s/

"There was this show that was on when I was in junior high (1987-1991) called “thirtysomething.”  (I assume that title format was creative genius at the time.) Here’s what I knew: the show was about people in their 30s and I wasn’t allowed to watch it. I couldn’t imagine what was so exciting in the lives of these old 30-year-olds that I wasn’t allowed to see. What happens in your 30s anyway? Nearing the “old” age of thirty seven I can now safely say – plenty! There have been the typical things – career-building, house-buying, baby-having – and some not-so-typical, like my current cancer-having thing.

I’m one of the rare, special women who have had the privilege of being diagnosed with breast cancer before the age of forty – at just shy of thirty six. It hasn’t even been a year since my diagnosis so my feelings and emotions of it all are still undeclared at best. I don’t know if I’m currently in or done with the processing stage but it doesn’t usually make me nauseous nor nail-spitting angry to think about anymore so I suppose that’s progress.

Our two children were 8 and 3 when I was diagnosed. That’s what having cancer in your 30s is. It interrupts parenthood and careers and begins to corrupt the story that you had so carefully crafted of your impending long, happy life. I haven’t until just now, as you are reading this, shared one major thought that burst from my shocked, terrified brain that day I was diagnosed; a thought about my family and their precious lives that I so cherish; a thought too cruel to utter -- what if I’m just the first part of their story?

I imagine that is the most common worry that enters any mother’s head when faced with a cancer diagnosis. What about my family? What would they do without me? Would they remember me? Aren’t they too young to remember me? What if I was just his first love?  And the list goes on.

My mind raced to cope. As we told people and they grasped for words of wisdom and ways to help, we simply asked for prayers of peace and comfort. Peace and comfort. I have to believe that as those prayers were answered my initial panicked question – What if I’m just the first part of their story? – gave way to a more peaceful, more comfortable maybe I’m just the first part of their story. Somehow thinking that I might have a purpose in all of this, regardless of the outcome, calmed me. I don’t know that I ever actually accepted that this was a true possibility…that I might die, that my family might eventually have another wife and mother to finish out the story that I started. I think the stream of reassuring test results kept those possible realities in check and the sprint of appointments, decisions, surgeries, and procedures took care of the rest.

A few weeks from now will mark one year since I was diagnosed with breast cancer. For the most part, when I look at the last ten months, it plays out like some surreal dream from which I’m still trying to wake. I will live the second half of my life having already experienced what we typically think of as reserved for grandmothers. In my 30s I have lost a major part of my womanhood and will never again look or feel “normal.” I will forever have the possibility of recurrence tucked away in my mind. I fear that the anger and disappointment associated with that will always be with me.

It’s now that I realize there is power in recapturing that initial terrifying question for myself – this really is just the first part of my story. My cancer experience is forever part of me now. It is something to grieve and when I’m ready I hope that I can accept it. But it’s just the first part of my story. I believe that the second part will be cancer-free and that I will be the one finishing the story of our long, happy life together…well beyond our 30s!"

Approaching my "Cancerversary"

I haven't posted since November?! That's pathetic. I'm asking for "holiday craziness" grace on that one. If you've ever blogged, you know that feeling when you're semi-constantly composing blog posts in your head but never make it to actually posting them. Or maybe you're much more stable and committed than I am and you do post them. Either way, what I'm saying is that I've had several posts floating in my head for two months now (and five un-posted drafts already half written) and I'll attempt to get them out of my jumbled mess of a noggin in the next few weeks.

When I started this blog it was out of shear necessity. I've been a writer for as long as I can remember. No, I've never published anything on paper, but I've always needed to write. When I was diagnosed with cancer, there were days when I had to lock myself in our bedroom and get the thoughts out of my head before I could continue my day. It helped keep me sane. That's why I began this blog. Over the following few months it helped me try to explain to others the practicalities and realities of what I was going through. It was a way to communicate what I wasn't ready to speak out loud.

Now I'm just a few weeks away from what the cancer circles call my "cancerversary." Dumb word? Yes. But it marks the day when I got that call that changed our lives. February 7th, 2014. I look back at the last year and I can hardly believe what has transpired. And I'm shocked that I'm starting to get over it. Back in April, after my bilateral mastectomy, I couldn't imagine a future where I wouldn't hate my body, a day when I wouldn't agonize over what was done and what was taken from me. But, in this new year, I'm beginning to think about it a little less. The discomfort and awkwardness nearly fades away as I'm running errands, conducting daily life, covered in normal clothing and knowing that nobody knows what I've been through or what I look like unless I decide to tell them. That's all oddly comforting.I'd be lying if I said that I don't still get angry or sad sometimes, especially when I hear that another woman has just been diagnosed with breast cancer. I get angry on her behalf and I allow myself to feel that kind of empathy for what she's facing. I'm still trying to figure out what this role of "Survivor" means to me. Some days I feel fine wearing something with a pink ribbon and joining in on "survivor stuff" and other days I want to run as far as I can and just attempt to move on. I'm sure things will become clearer as time goes on, but for now I feel like I'm in an emotionally solid place (thank you, Celexa). I'm sure I'll write about it if things change.

A little housekeeping business:

As I continue with this "breast cancer" blog, my posts will likely evolve from talking about myself to giving practical advice to other breast cancer patients and their friends and family who are looking for ways to cope and help. I've already been asked by many people about which organizations to donate to, what to put in care packages, how to prepare for a mastectomy, etc. I'll work on addressing some of those issues in the coming months. I will also share links to other blogs, articles, health info, etc. that I think are helpful. If you came to this page because you have been touched by breast cancer and you'd like me to address a certain topic, please leave a comment and I'd be happy to look into it. Also, many people prefer to leave comments on my Facebook page instead of on my posts, but I'd love for other struggling women and families to be encouraged by your comments (as I am) so please consider leaving comments directly on the posts. Thank you!

A Different Kind of Bra Burning

Last night I went to bed with today's to-do list looming. Both kids would be in school and I should have been able to get a ton done. I suppose I did get a lot done, but not nearly enough. One of my first stops of the day was at Target. Oh, Target. What a love/hate affair. I love it because, well, who doesn't? I hate it because I always spend too much. It's very cliche. Today I hated it for a different reason though. On my shopping list were the normal things -- toiletries and such -- but there was also something that I've been dreading and putting off for a while now. Bras. I really needed to buy some bras that weren't sports bras, which is what I've been wearing since my mastectomy. I've been cleared to where whatever kind of bra I want now that my incisions are healed. Sure, it would be logical to go to a better store where someone could measure me and tell me what size I need and all that, but I'm nowhere near being able to go there. The thought of having to explain to the salesperson the mess that she was about to see...I just can't do that right now. So, Target it is. I was literally shaking and almost in tears in that stupid bra section today. I wanted to throw all of those pretty lace bras in a pile and have a big bonfire right there. My body is not shaped like that anymore. I can't imagine wearing anything that has any shape (or appeal, for that matter) to it. I settled for some lame, non-structured things that are basically just one step away from a sports bra. I guess that's a start.
The dumb bra thing really impacted my entire day. I zombied through the rest of my errands and checked things off my list, but I didn't get the important things done. I wasn't very patient with my family. I couldn't concentrate enough to get my writing finished. And now I feel like I have to vomit out all this stuff about bra shopping before I can continue my night. But do you know what? This week a friend is facing the recurrence of her cancer. I think I can face some annoying bra shopping.

We're all Surviving Something

I get it. I'm a Survivor -- one with a capital "S." I don't know when the breast cancer pink machine started using that term but I'm not all that comfortable with the label. That day back in February when I was diagnosed, I got angry. Very, very angry. How dare that little b*tch, Breast Cancer, think she can mess with me like this. It went through my head. I didn't say it out loud, lest BHE think I'd gone instantly insane, but I sure thought it. What I did say was, "Nobody better freakin' come at me with any pink ribbon, glittery crap, or try to do some charity nonsense in my name. I'm.not.having.it.!"

It's been over nine months since I much-more-than-uttered those words. I now have pink stuff, some of which I've even obtained on my own accord. I made it through my first Race for the Cure as a Survivor. I wore the pink shirt, posed for the group photo, let go of the pink balloon (even though there was no "less-than-a-year" release category), and even managed to feel some sense of belonging and pride during the whole thing. It's the other women, those who understand what this is because they've been there, who have made me more tolerant of my new group membership.

This week I had my six-month follow up with my breast surgeon (Kick A** Surgeon -- shout out!) and my six-week follow up with my plastic surgeon (Shout out! Kidding -- I know he doesn't read this.). I won't have an appointment with KAS for another year, with my plastic surgeon for another four months, and I don't see my oncologist again until December. If you've seen my running timeline you know that this spacing is huge, especially considering the dead sprint we were in back in the spring. It means that we told breast cancer to get the h*ll out, slammed the door in her face, and watched her run, screaming, into the night (any of my college friends get that reference?). That sounds pretty violent -- I promise I'm not a violent person, except when cancer comes around.

My physical struggle with this beast is coming to an end. The medicine, Tamoxifen, that I'm taking for the next 5-10 years is not my favorite thing in the world (ice cream involving chocolate and peanut butter is), but I appreciate its proven effectiveness in keeping this cancer away. It's causing physical struggles but nothing that I can't handle. As for the emotional struggle of breast cancer, well, that's another story. I honestly don't know where I am with that. It'll take time.

This week I did something that was somewhat healing. I spoke publicly about my breast cancer experience for the first time. Our awesome, sweet, smart, talented, beautiful goddaughter type person (shout out!) invited me to speak at her all-girls school. She organized a pink-out day and each girl paid two dollars to break uniform and wear pink. They raised several hundred dollars to donate. So impressive! I spoke to a cafeteria full of 7th and 8th graders, reading from a few blog posts and ending with a word about survivors.

It was the first time that I put into words what I'd been thinking since that day back in February when our world stopped spinning. We are all surviving something. My something just happens to have millions of dollars and serious PR behind it. It's now pink and popular and heroic. Other struggles don't get that kind of support.

I looked around that cafeteria on Wednesday -- hundreds of girls, a few that I knew, and thought about the magnitude of their present or future "somethings." Violence, abuse, divorce, poverty, illness, eating disorders, secrets, shame, guilt, learning struggles, bullies, addiction, and on and on. They are surviving big things, too. The fact is, I was a survivor long before breast cancer ever came knocking. And if I'm being honest, breast cancer probably isn't even the hardest thing I've survived thus far. Anxiety, depression, poverty, parental alcoholism, miscarriage, death of a parent -- those things were hard and couldn't be cut out or treated with medication. Obviously, I'm not arguing that breast cancer isn't insanely difficult. It is, and it's much more difficult for those who have undergone chemo, radiation, complications, and recurrences. It probably is their ultimate tale of survival.

I think of many of my friends who are surviving things I can't even begin to imagine -- sick kids, crushing relationships, chronic health problems, family violence, financial ruin, sexual assault, body image demons, and much more. Friends, you are survivors! I see your bravery, your perseverance, your fortitude. I admire your strength and courage. I wish there were ribbons, races, and colors in your honor because you are surviving and I see you! Your fight against your something has helped carry me through mine. I would love to think that 2014 will go down in our books as the hardest of our lives but I know that it likely won't. We're young and we have a lot more life to lead. I do know that what I am learning during this struggle is making me stronger, able to walk with greater confidence through difficulty, and more eager to hold the hands of others during their dark times. This is the purpose of my survival. If we don't use our difficult experiences to bring light into the darkness of the struggling, then what's the point of surviving in the first place?

The Timeline

How this all goes down:

Jan. 29, 2014 -- Saw OB/Gyn about a small mass I found over the holidays
Feb. 5 -- Ultrasound & mammogram
Feb. 6 -- Biopsy with breast surgeon
Feb. 7 -- It's cancer. Sh*t.
Feb. 13 -- Test results: ER/PR +, Grade 1 tumor (good news)
Feb. 19 -- First meeting with Onocolgist
Feb. 25 -- Test results: BRCA1 & 2 negative, Her2 negative (good news)
Feb. 27 -- First meeting with Plastic Surgeon
Feb. 28 -- 36th Birthday
Mar. 3 -- Bilateral mastectomy scheduled for Apr. 2
Mar. 13 -- Pre-op with breast surgeon
Mar. 14 -- Surgery rescheduled for Apr. 8
Mar. 17 -- Test results: Oncotype DX score - 8 (great news!)
Mar. 24 -- Appt. w/Oncologist
Mar. 25 -- Anesthesia pre-op
Mar. 27 -- Plastic surgery pre-op
Apr. 8 -- Bilateral mastectomy with expanders for reconstruction
Apr. 10 -- Released from hospital
Apr. 15 -- Follow-up with breast surgeon; final pathology report: scattered DCIS in right breast, lymph nodes clean!
Apr. 17 -- Follow-up with plastic surgeon; drains removed
Apr. 20 -- Easter
Apr. 21 -- Follow-up with oncologist; Rx for Tamoxifen (and Coumadin)
Apr. 21 -- Plastic surgeon; first expansion (250 cc to 325 cc)
Apr. 24 -- INR (clotting level) check; Coumadin at 5 mg
Apr. 28 -- INR check; Coumadin to 1 mg, begin Tamoxifen
Apr. 29 -- Plastic surgeon; second expansion (325 cc to 400 cc)
May 2 -- INR check; Coumadin to 2 mg
May 5 -- INR check; Coumadin to 3 mg
May 9 -- INR check
May 11 -- Mother's Day
May 13 -- Plastic surgeon; third expansion (400 cc to 450 cc)
May 14 -- INR check; hold med 15th, Coumadin to 2 mg on 16th
May 15 -- SJ turns 4 yrs!
May 18 -- 12th Anniversary!
May 19 -- Appt. w/oncologist; INR check
May 22 -- Plastic surgeon; fourth expansion (450 cc to 500 cc)
May 23 -- INR check
May 29 -- INR check; stable at 2 mg Coumadin
June 3 -- Plastic surgeon; fifth expansion (500 cc to 550 cc), last fill!
June 10 -- INR check
June 11 -- OB/Gyn, discuss Mirena IUD removal (because it emits estrogen)
June 16 -- Plastic surgeon, no more fills, set exchange surgery date
June 24 -- INR check
June 24 -- Plastic surgeon, pain in left pec. muscle
June 28 -- Aqua Zumba with other BC people, first time to call myself a "Survivor"
June 29 - July 5 -- **First week since Jan. 29 with no appointments!**
July 7 -- INR check
July 28 -- INR check
Aug. 5 -- Plastic surgeon, pre-op appt
Aug. 13 -- Stop Tamoxifen & Coumadin in prep for surgery
Aug. 18 -- Follow-up with Oncologist
Aug. 25 -- CB starts 3rd grade!
Aug. 27 -- Exchange surgery
Sept. 2 -- Follow-up with plastic surgeon
Sept. 3 -- Restart Tamoxifen & Coumadin
Sept. 9 -- INR check
Sept. 23 -- Follow-up with plastic surgeon
Oct. 4 -- First Susan G. Komen Race for the Cure as a Survivor
Oct. 21 -- First time to speak publicly about my experience
Oct. 22 -- Follow-up w/breast surgeon
Oct. 23 -- Follow-up with plastic surgeon
Nov. 19 -- INR check
Dec. 17 -- INR check
Jan. 12, 2015 -- Follow-up w/Oncologist

*Not* the Final Countdown

It's been six months and nineteen days since my breast cancer diagnosis, four months and eighteen days since my bilateral mastectomy, and twelve hours until my breast reconstruction surgery. CB started school yesterday so our summer is officially over. We packed in a lot of fun over the past few months -- trips & visits, waterparks and pools, camps, parties, and everything in between. I kept us busy on purpose. It meant less down time to sit and dwell on cancer, or medication side effects, or the weirdness that is my body right now.

I'm not sure what to make of the last six months. Suddenly I'm a member of this club full of great people, but the club that no one hopes to be in. It's an odd world of pink ribbons, sparkles, scars, and discussions of things that used to be intimate but are all too common and public because of our shared experiences. I've met amazing women and the people who love them. It's helped. I've gone to a few "survivor" events this summer even though I feel so weird identifying as that. I know I'm lucky to have caught my cancer early. I knew what to do and who to go see. I have insurance and a health savings account that's handled this well. Many, many women don't have such advantages. I've seen many who have waited, and those whose tests didn't go the way mine did. They've been through so much more than I have. 

My cancer was cut out of me four months ago. My lymph nodes were clean. People have been asking, "So, it's all gone?" or "You're cancer-free?". I just respond with, "As far as we know." That's the truth. As far as we know. That's not me being pessimistic, it's me being realistic. This deal isn't over. I'm taking a cancer medication for the next ten years to hopefully keep the cancer from coming back. I've talked about this more in previous posts so I won't go into detail now, but this drug has possible side effects raging from annoying to life threatening. It's not a cake walk.

**Detailed stuff here -- read at your own risk**

Phase 2 of my reconstruction process is tomorrow. Some would look at this as being closure to my cancer experience, a sort of last hurdle, a way to get my body back to normal. That's far from reality. My body will never be "normal." I'm not sure people understand what happens during a mastectomy. I didn't when this started. While there are different degrees and procedures according to location and severity of the cancer, every patient is left with prominent scars. Implants don't fix that. Currently, I look like I have two softballs attached to my chest. They look like circles with horizontal lines across the middle. Tomorrow, when the tissue expanders are removed and replaced with implants, things will be a little lower and softer. They'll still be circles with lines. No nipples. No feeling. Just numb mounds of skin to make things look more normal with clothes on. That's the literal technical goal of breast reconstruction -- to appear normal with clothes on. Some women get nipples reconstructed using skin tissue then have the surrounding skin tattooed to look like an areola. I suppose it's an attempt to trick the eye when they glance at the mirror. I've decided against that. I don't think having fake nipples that have zero feeling will make me feel better about any of this. What I'm getting at here is that breast reconstruction is not a boob job. It's not augmentation. There are no breasts left to augment. I don't know what bra size I will be because it doesn't compare that way. The implants will likely be much smaller than my real breasts. It's hard to recreate with implants what took me several years and fifty extra pounds to create on my own. So, no, I'm not excited about having implants. I liked my real breasts. They were pretty great. I'll be glad to have these tissue expanders out and to no longer look like I'm deformed from a bad boob job. I'll be glad to not be waiting for another surgery. That's about it. I'm not excited tonight. I'm just ready to get this phase over with, but I know it's just this phase. I've been off my medication for two weeks (in prep for the surgery) and I'll go back on it two weeks from now. I've had withdrawal symptoms that make me feel like junk and I'll get to experience all of it even more when I start the meds again. 

It's all annoying, frustrating, and depressing...if I let myself go there. In reality I know that there are much bigger and scarier things going on in the world and in the lives of those around me. Not that I'm minimizing this whole experience or that of others who've experienced the same, but when I look at the big picture I know that my life is still incredibly fortunate, cancer or not.

Milestones & Mother's Day

This week marked three months since my cancer diagnosis and one month since my mastectomy. I've had somewhere around one thousand different thoughts and feelings fly through my head and heart since then -- sadness, loss, thanks, joy, relief, anger, guilt, gratefulness, loneliness, fear, hope, and more. A lot of great things -- birthdays, vacations, holidays, etc. -- have happened since then and when I look back over the last three months I see a lot of joy and blessings. There's also been plenty of pain, both physical and emotional. Going from just a normal healthy person to having this cancer label has been a trip I didn't anticipate. Aside from the pain of surgery and recovery I have never once felt sick because of cancer. Mine hadn't spread. It hadn't interfered with any other body parts to cause problems or symptoms. It had to go though, so I had both breasts removed and I'm still recovering and having pain from that. Breast reconstruction hurts. The expanders are hard and painful. The chest muscles have been cut, sutured, and are struggling to work right again. Nerves are trying to wake up and regrow. I'm spacing out my expansions to two weeks apart so that I can have a "good" week after I've had a fill and that's helped. 

Technically the cancer should all be out of my body, as far as we know. I've begun taking Tamoxifen, an effective and proven drug that dramatically reduces the chance of recurrence. So far I've had no side effects. Because I have a history of blood clots I'm also taking a blood thinner in an attempt to avoid clotting while on Tamoxifen. I've been going to the cancer center for blood work twice a week while we get my clotting level stabilized. In a few months, whenever we decide to do it, I'll have my expanders replaced with silicone implants. If all goes as we hope, a few follow-up appointments here and there for med monitoring (for the next ten years) and screening exams will be all that's left of my breast cancer experience. Well, that and the scars and the flesh that's supposed to resemble new breasts. :/ I feel guilty that I avoided chemo. I never had to get sick and worry about bigger things like infections from a compromised immune system. I didn't lose my hair or have a port. It's an odd mixture of relief and guilt.

My biggest fear when I was first diagnosed was that I would leave my kids without a mom, so I'm beyond grateful that I'm not leaving them anytime soon. I don't know that there's any greater gift I could have gotten this Mother's Day. My mom's been here for almost six weeks. I have not touched a single load of laundry or dishes in the last month. She's cleaned, watched and entertained kids, welcomed visitors, and just "been here" all without once complaining. I know it's not easy seeing her daughter go through this but she has been a rock. It would've been much more difficult without her. My other rock? BHE. Well, he's my rock all the time, regardless of cancer, but he's been unwavering though I never would have expected any different. Getting to celebrate them and motherhood to our sweet kids was extra special yesterday. 

This will be my last post before I take a little break from this blog. Life is busy right now with the end of school and beginning of summer, and while I still have this recovery/reconstruction/med business to bother with I have so much more fun, excitement, and joy to experience. I feel like the rest of life has played second fiddle to cancer for the last three months but now while I have a little break in this deal I need to participate in "normal" while I have the chance. Out of necessity, I've focused on myself for most of the last three months, missing milestones and big things in the lives of friends and family. I've been selfish, warranted or not, while others took care of us. I need to get back to caring for others now. I'll only have a few months of that before I have my second surgery so I'll squeeze it in while I can. We can't thank everyone enough for all of the prayers, calls, texts, messages, visits, food, favors, etc. that have gotten us through this time. Although it's not quite over and there may be unknowns to come, we are so comforted by our network of friends and family who have shown us incredible love and care through this. I don't know how we would've done it without you. Thank you!