So today is my one year “cancerversary”. One year ago today, I got a phone call from the radiologist (aka Dr. Debbie Downer), the woman who initially found the three masses in my chest via ultrasound and then performed the biopsy on those (and a fourth one she discovered at the time) a few days later.
Needless to say, the phone call did not go well. For starters, she used the word “positive” which for anyone NOT waiting to hear back about a cancer diagnosis is a perfectly fine word. If you happen to be waiting to hear whether you’re going to maybe die or lose some of your body parts, though, “positive” isn’t all that, well, positive. And as it turned out, I was a very positive patient, with all four of the masses in my two breasts coming up roses for invasive lobular carcinoma, otherwise known as ILC, or “evil cancer” as my breast cancer surgeon likes to call it.
I still have the notes from that horrible conversation, slip-cased in a plastic sleeve and stuffed into a giant three-ring binder. In fact, I have everything from this past year stuffed into that binder — scribbled notes from phone calls with nurses, social workers and breast cancer survivors; MRI reports where they talk about my “unremarkable uterus” and my “grossly normal bowel”; pages and pages of printouts of upcoming doctors’ appointments; get well cards from friends and colleagues and my wonderful nieces and nephews (I still love 9-year-old Charlie’s post-surgery card the best: “Doctors are dumb,” he wrote. “You are so not sick. Also you have a lot of sex in you!”).
Somewhere amidst all of the pathology reports and medical handouts and hospital bracelets (yep, I saved those, too), I even have a lint roller sheet covered with the last vestiges of my dearly departed blonde hair. After shaving my head, my scalp itched like crazy so my wig guy said to just take the rest off with masking tape. Somewhere in a closet, I even have one of my drains and the port they took out of my body three months ago (both completely scrubbed up and sterilized, of course).
I’m not sure why I’ve saved all of this stuff, but it just seemed important at the time. I guess I wanted some kind of record of my awful year — my annus horribilis — and at present, this notebook, these odd bits of breast cancer detritus, are it. Now that I’m three months out of treatment, I have very few things to save in my notebook. Instead, I’m finding myself taking things out and reading through them, trying to decipher what the hell, exactly, happened to me over the course of these last 12 months.
While I was living it — those first tearful appointments with the surgeon, the indignity of the drains following the double mastectomy, my three months of chemo and then those long six plus weeks of radiation — I remember telling myself that I would never forget a single moment of the torture I was going through. That the anger, the shame, the pain, the fear, the weakness, the “otherness” (with my bald head and flattened chest I felt like a space alien half the time) would be seared into my brain as deeply as the radiation burns seared my chest.
But the memories have already begun to fade — either due to medication or stress or chemo brain or the body’s miraculous ability to do what it needs to do to heal itself. Truth be told, there are probably some things I shouldn’t remember. Although if I want to, all I have to do is open my notebook (or close my eyes and begin to type) and a lot of it comes flooding back.
Not that I’m anywhere near done with my great breast cancer adventure. Reconstruction — in some form — still looms ahead. One day, maybe even some day this summer, my flattened gnarled chest will no longer look like one of the talking trees from The Wizard of Oz or that old WWII cartoon, Kilroy Was Here, whenever I lean forward. Instead, I’ll have boobs and cleavage and fat covering my very visible ribcage. If there’s a god, I may even get some feeling back in my skin and nipples. Or finally be able to get rid of the weird constricting pain in my chest and armpits that comes from scar tissue and adhesions, pain that I and other breast cancer survivors use nicknames to describe: Gulliver chest, rubber band pits, twang arm.
Not that things are all that bad. As I sit here typing and ruminating on the dark days that are behind me, I can definitely see progress. I seldom cry when I talk about the cancer or my lost girls anymore. I’m no longer a chemo invalid, hobbling around my apartment, hanging on to chairs for support and using a wrench to open water bottles. I no longer have to slather Aquaphor healing ointment onto a lobster red chest or pop Vicadin for the deep burning pain that comes with radiation. These days, I’m back out running and swing dancing and tap dancing and doing everything I did before (including making poor food choices — still need to work on that). These days, I’m no longer a bald space alien — I’ve got at least an inch worth of hair on my head and a pixie “haircut” that looks almost intentional. Granted, my hair’s a completely different color and a completely different texture than it was before (it’s much more gray, for instance), but it’s a start. Most importantly, it’s not going to start coming out in handfuls the way it did 10 days after that first dose of taxotere and cytoxan.
The bottom line is I’m still here. And the cancer’s not. At least it wasn’t the last time I had my tumor markers checked. The doctors won’t tell me I’m cured or cancer-free (at least not for a few more years), but I can say that I’ve made it a year past diagnosis, which is more than I expected when the phone call from that oh-so-grim radiologist came in, 12 months ago today. And while breast cancer’s hardly something to celebrate, getting through the diagnosis, the surgery, the chemo, the radiation and yes, even the “recovery” process, most definitely is.
So even though it’s only 10 a.m., I’m tempted to pop the cork on one of the champagne bottles in my fridge. Or perhaps make myself a martini or Manhattan or mimosa (anything but a chemo cocktail).
I’ve made it a year, folks. I’ve made it a year.
Yeah! Happy anniversary! –Mary, presently slightly radioactive cancer sister from Sweden
Happy canciversary. It’s a weird thing to wish, because I wish you never had cancer, but I’m glad you are here to celebrate. You are a rock star! xoxo
Congratulations! You’re here!
We should start a collection of knicks-knacks for scrap books like the ones they carry in Michael’s. Can you imagine? ‘ Annus Horribilus’ in Gothic font, I think. A pretty paper pair of sheers with the date you shaved your hair. How about little pink clothes pins to hold your hospital bracelets. We can call it the Venus Collection. What do you think? Cancerpreneurs, we are.
Another awesome entry, Diane. You capture so perfectly the physical and emotional roller-coaster of a year in Cancerland. I love the line about the “unremarkable uterus.” It reminds me of the time my surgeon told me, “This brain is of no consequence.” Thanks, doc. We made t-shirts and refrigerator magnets with that slogan and an MRI image of my brain.
I know it seems odd to be “celebrating” a cancerversary, but it isn’t: It’s a cool, smart thing to do. I celebrate my spazziversary and surgeversaries every year.
So, Happy Cancerversary! Martinis for two, soon.
A great post! Reflecting back on your year with you, made me feel, um…like your friend? I don’t know you, but I KNOW you.
Celebrate and I’ll raise my flat Ginger Ale to you and this next chapter.
Your honesty gives other permission to be honest. Your humor gives other people permission to be funny. You are giving people a gift by writing so well about the journey.
Break out the Champagne! Congrats on your cancerversary. You made it!
By all means, pop that champagne! You’ve earned it and you certainly deserve it.
Congratulations!!! Happy cancerversary and many more!!!
Happy anniversary! Awesome post. This is a great example of why we write these blogs, to prove to anyone just getting that crappy phone call, there will come another day when things are behind them. They’ll get through. Thank you for this post which perfectly illustrates that. I’m so glad you’re a year away from that phone call. xoxox
Another year and you’ve made it. I’m coming up on year two in a couple of months. I so relate to this post. I’ve saved a lot of stuff too, not entirely sure why either. Anyway, congrats on reaching this point. We’ll take it, right?
Congratulations! It is heartwarming to hear that you are doing well.
I believe a celebration is in order. These finish lines don’t always bring us the sense of completion that we wish, but I feel that by marking our progress, we can do a little to take the reins of our life back.
Sending you a big hug, sister.
Happy Happy Cancerversary indeed! You are gorgeous and you are surviving…plus, you are pretty funny and a very good writer!! This month marks FIVE years for me…it all seems a bit weird, but in a good way!
big hugs from Holly
celebrate life cause Champagne is what you deserve
I treat myself with some every 4 months to celebrate life, love and strength
Cheers
Happy Cancerversary! Mine was about 7 weeks ago. Here’s to us both. I found packing tape very effective in removing hair, one of those useful factoids I just file away and hope I never need it! I haven’t saved much of anything myself… Felt the need to leave the patient behind, plus I’m too disorganized.
All the best for what’s ahead!
Best
Elaine
Late to your party, but wanted to wish you a happy cancerversary! Cheers to you, and to all the great writing you do.
Awesome!!!
Pop a cork on a FINE bottle!!! You’ve earned it!!!
MANY more to come!!!
Sending hugs your way on what is a huge milestone. And you so beautifully describe how different it is being a year on this side of diagnosis. I love the fact that we also have labels for our wretched uncooperative arms and scarred chests – for me it feels like a way of taking some control back where so much has been taken out of my hands.
I hope you did crack open the bubbles, they are well deserved
Philippa
xoxox
Congratulations and thank you so much for your inspiration! I love that you still find humor and the willingness to share with us. I can’t wait for my Cancerversary!!
Celebrate. Yes. YES! You deserve it. Congrats.
Thanks so much for all of the wonderfully kind comments, everybody. And I’m sorry for being such a shameless wretch and not even acknowledging them until today. I guess it’s just been a busy week. I’m trying to get back on the work horse a bit more. Plus, I’ve had some doctor stuff. On Monday, I had my 6-month follow-up with the oncologist. The blood tests all came back fine, with my tumors markers at 16 (they were 12 at 3 months). Anything below 40 is normal, though, so I’m trying no to sweat it. I have to have a CT scan in a couple of weeks on a pesky lung nodule they found during test-a-palooza last year (onc wants to see whether it’s grown) and I’m trying not to get nervous about that. What, me worry? ; ) I think we all know that drill, yes?
Anyway, sorry to throw out this blanket thank you to everybody at once, but I hope you’ll understand. Really, really appreciate all the support and love I’ve received from you all. Especially love that some of it is coming all the way from across the world. I’m talking to you, Mary in Sweden. ; )
Much love and #FUcancer,
-Diane
Not a shameless wretch!!
Looking for an update, if you’re willing to share, on the pesky lung nodule.
I hope that you’ve had several bottles of champagne since posting 🙂
I’m on day 3 of radiation… Good times.
Thanks for understanding, Kim. I’m going in on Monday to have a CT scan on my pesky lung nodule. Am a little nervous about it, but trying not to freak. I’ll be meeting with my onc right afterwards, so at least I won’t have to wait around for 3 days to get the results.
Congrats on making it through 3 days of radiation. I became the greasiest gal in town when I went through rads, trying my best to keep my skin from peeling, etc. Aquaphor (by Eucerin) worked pretty well during the last couple of weeks (I started with something milder). Hope you’ve got good rad techs (I had 3 and they were awesome). It’s definitely a long haul, so I’ll be thinking of you.
All the best,
-Diane
Very cool that you don’t have to wait for results!
I’m using a cream called Ceravie. Pretty thick and greasy. The blue Sharpie marker that was used on my boob transferred over to my bra after applying the cream. Awesome to have a map of Nebraska on my Victoria Secret. I blogged about my first meeting with my tech. They are a great group and they make me smile while I’m getting my hide tanned.
Very cool and congrats! Glad I found your blog!
Thanks for the kind words and I’m glad you found my blog, too!
Congratulations on competing Year 1! I had my cancerversary on Feb 22, with my surgeversary coming up on March 23 – double mastectomy due to invasive ductal, invasive lobular ( both primary sites) and LCIS all on the same side. By the grace of God, I did not need chemo or radiation, but I am on Tamoxifen and receiving monthly anti hormone shots. Pretty easy compared to what some people have to go through, I am not complaining. I also have the most wondereful plastic surgeon. Your articles have resonated with me and I am so glad to have found your blogs. I will be thinking of you as you learn about the lung nodule! God bless.
Wishing you well.
Girl …….You are Awsome .I salute your Strength.Thats Truely Strength Of A Woman.
Thanks for your honesty and humour. Just about to hop onto that wild roller coaster ride myself. I’m having a hard time deciding to do a double mastectomy or just leave the good breast alone…or should i just get rid of all possibility of more cancer, symmetry, loss of sensation, so many things to consider… Would love to hear your thoughts about this? My surgery is scheduled for Feb 5…
Thanks for the nice note and so, so sorry to hear you’ve been diagnosed with this craptastic disease. Ugh. You’re going through the worst part now – dealing with the fresh diagnosis plus grappling with your first taste of uncertainty re surgery, treatment, etc. I don’t know if it gets easier, but you do get used to dealing with it. I wish I had some answers/advice for you re single vs. double mastectomy but I had tumors in both my girls and was diagnosed with ILC (invasive lobular carcinoma), a type of cancer that tends to hit both your breasts. Basically, I had no choice; I had to lose both my breasts. To be honest, I’m sort of glad I lost them both because of the symmetry issue, but reconstruction is no piece of cake (of course, recon is easier if the breast is healthy – no complications from radiation, etc). I would read up on the type of cancer you have and whether it’s likely to show up in your other breast (try Dr. Susan Love’s breast book/website or Komen or the American Cancer Society for stats). I would also talk to other survivors about their decision to prophylactically remove a breast. Also talk to your doctor to get his/her recommendations. And then, I don’t know, flip a coin. Seriously, there’s no way to know if you’re making the right decision. All you can do is be as informed as possible and trust your gut. Again, Jasmine, I’m so sorry to hear you’ve become a member of the BC club. The dues suck, but the members are great, if that’s any consolation. ; ) Wishing you all the best and sending you big hugs.