Surviving Cruella -- Update/Recap

Post Shower Selfie!

Happy Valentine's Day! Today is a great day. Always good to start with good news, right? I took my FIRST SHOWER IN 3 1/2 WEEKS (ahhhhh), and I'm going sewing machine shopping with my BFF today! I cannot wait. I am going to give 3-4 Janome machines a test run. Hospital bills be damned, I am buying a fancy pants machine. Happy early birthday to me!

There's a lot happening over here in cancer land, and Monday is going to be a big day*. I've been thinking about everything that has happened over the last couple of months and thought I'd lay out the timeline. So let's recap, shall we?

4/12/83 -- The world loses a beautiful, witty, loving soul, mother, daughter and friend. My first mother, Christine Elaine, succumbs to breast cancer at 37 years young.

December 2013 -- I finally ask for and receive a referral for a mammogram. I am 38.

October 2014 -- I have my first mammogram at the GW Breast Center. It is quick and easy!

November 2014 -- I return for follow up imaging, spend four hours at the Center, and learn I have a lump that needs to be biopsied.

December 9, 2014 -- I have a needle core biopsy. The radiologist expresses concern and offers that she will rush the results.

December 12, 2014 -- Husband and I return to the Center and hear for the first time that I have invasive ductal carcinoma in the right breast. The tumor is tiny but must be removed either through lumpectomy or mastectomy before it spreads. We name it Cruella De Vil.

December 15, 2014 -- MRI confirms the tumor, does not show lymph node involvement, and finds a second, small, ambiguous growth to be biopsied if not removed via mastectomy. I plan for genetic testing to help me decide lumpectomy or mastectomy.

(Holidays, merry, merry)

January 2, 2015 -- Genetic test results confirm I carry the BRCA2 gene mutation associated with a higher risk of breast and ovarian cancers. I learn I will have to have my ovaries and tubes removed, in addition to removing/treating the breast cancer. I am relieved and decide on a double mastectomy.

January 21, 2015 -- I have the double mastectomy surgery; no implants but the plastic surgeon saved my nipples. My lymph nodes are clear -- the cancer is stage 1, hooray! I feel sore, nauseous, overwhelmed, and optimistic. The Village kicks into high gear with visits, flowers, food, gifts, and lots of love and support. 

(recovery, recovery, recovery)

February 5, 2015 -- We meet with a high-risk oncologist about my BRCA2 status; she says "a short course -- 12 weeks --  of chemotherapy" is a distinct possibility because of my "young" age. I am completely confused by her description of how the oncotype test works. 12 weeks of chemo sounds like an eternity. Treating cancer when my breasts are gone and lymph nodes are clear seems excessive, but I agree to reserve judgement until we know what we are talking about. 

February 7, 2015 -- Percocet withdrawal knocks me on my butt. I cave and re-dose, vow to follow the doctor's slow withdrawal plan.

NEW: February 12, 2015 -- The second/final drain is removed and breast expansion begins! I haven't showered in 3 1/2 weeks; I plan an epic shower for Saturday, 2/14.

NEW: February 13, 2015 -- The oncotype results are finally in! The patient navigator can only tell me I am "kind of in the middle" and will need to discuss with the oncologist. Chemotherapy seems even more likely. I again try and fail at Percocet withdrawal; slow down even more. 

Now that we're current, here's a look at what's next. 

*February 16, 2015 -- Husband and I are going in for our first meeting with the oncologist who will treat me (as opposed to the high-risk oncologist who helps me evaluate my overall cancer risk and planing vein my BRCA2 carrier status). We will receive the actual oncotype test result, discuss what it means and what my treatment options are. 

February 17, 2015 -- My first day back to the office in a month!

There is still a lot TBD for 2015. 

Under Construction -- my new boobs!

TBD -- The actual treatment plan and implementation.

TBD -- The oopherectomy to remove my ovaries and tubes.

But one thing is certain: I am kicking Cruella's asssss and we're going to celebrate the heck out of it in April.

The first five days

Surgery complete and recovery in process!

The surgery was a long 7 hours. When I woke up I was groggy, nauseous and sore. The nurse was cranky. I had to wait nearly five hours for my room. But my doctors and husband came by and I was able to comprehend the good news through the narcotic fog: no cancer in my lymph nodes, and both nipples saved! No implants, though. I will have to go through the long, usual expansion process. And, chemo still hasn't been ruled out. 

The first 24 hours after surgery were awful. The anesthesia kicked my butt and I couldn't shake the nausea. Every hour someone came in to take my vitals, give me pills, or poke me. My arm ached. My skin was itchy. 

Once I ate solid food, got some Valium and a little sleep, i started to feel better. The second night I convinced a doctor to do something about the tape and itching and the nurse scrubbed off the iodine that was making my skin crawl. A little more human. On the last day I switched from a morphine drip to Percocet and I felt even better. Ready to go home!

My parents were able to visit, my husband, my sister, my mother in law, and my best friend. Having them near was so important. The nurses were amazing. I hated being helpless, needing to ask for help to stand, to wash, to eat. So much I used to take for granted.

When I came home I cried when I hugged my kids. I slept a full night. I opened an assortment of gifts and read emails that reminded me I am loved. I watched the most recent episode of "Parenthood" and had a good, long, cathartic cry. All of the pent up emotions, the overwhelming feelings, released.

It took me a few days to look at myself in the mirror. To face my stitches. My breasts are mostly gone, but I look okay. And with a few days behind me, I know I will be okay. If chemo is next, so be it. It used to be the thing I feared most. But I'm a survivor. I just keep keeping on.

So many people have stepped up to help. The village is strong! I am so grateful. Food, kid care, books, treats, socks, flowers, and more. So much beauty in the village. So much love. I am spoiled.

Tonight H, my little guy, sleeps beside me. He may not return to his bed for a few days yet. We are needing each other right now and it's more than ok. M, my big guy, is processing the changes. He is smart and sensitive and kind. He leans on his father and his grandmother, but he comes to tell me he loves me. He needs me in different ways, and in time we will get back to where we were. For now I remind them both I am not leaving. I am here. 

Reality Check

On the day of the second mammo, I lose my smartrip card between the bus and the metro. It feels like a bad omen. I frantically pat myself down -- coat, pants, backpack -- over and over again. The woman beside me says nothing. When I exit the train, it is raining and I have no umbrella. I try to convince myself it isn't another bad sign. I arrive at the Breast Health Center at 8:15am. It is a curiously glam space with pink and silver decor. 

The man who takes my paperwork is too grumpy to be working at the breast health center. He tells me I have the wrong paperwork and I have to go downstairs to my midwife's office to get the correct order. As soon I as I walk into the midwife's office, I cry. I hand over the letter from the midwife that says why I am there and the receptionist gets me the right order. She calms me down and hugs me. I go back to the breast center and wait.

I'm escorted to the changing room where I put on a gown that is meant to strangle or expose me. Then I enter the diagnostic waiting room where I feel conspicuously young. We all wait. I am called for the second mammogram and the technician tells me to go back to the waiting room--more waiting--and they'll come get me if they need to do another one or an ultrasound. She also tells me that after the doctor looks at the screening she will talk to me about the results. I'm reassured -- I don't have to wait three weeks! 

The technician returns for me and I have another mammogram. It's after 10am and I have an 11am appointment to renew my passport. I learn there is only one doctor on duty. I ask if she can find out if I will need an ultrasound. She says without hesitation that I'll need one. I don't think anything of it, except that I need to cancel my passport appointment.

Eventually I am moved to another waiting room. I try calling the post office where my appointment is but no one answers the phone. The ultrasound technician retrieves me and scans only my right breast. She leaves briefly to speak to the doctor and returns to tell me I'm done. I get dressed, relieved that the appointment is almost over. She takes me to meet the doctor -- not the woman I was expecting but a young man. On the screen is my breast. It looks white, with a curiously round black spot. He recommends a biopsy. I am in shock but I hear him when he says 75-80% are nothing. I ask no questions. I'm taken back to another room to make an appointment. The scheduler asks me how I am and I cry.

When I leave it is 12:15pm. I cancel my lunch plans and go shopping. I buy overpriced ornaments for my boys to hang on the Christmas tree we will buy that night. I call my husband. He tells me we will be fine. I text my best friend. I tell her I won't discuss it. I don't tell my family.

I remember how just a couple of months ago, before my first ever "routine" mammogram, I told my friends I was convinced I would be OK. I've already outlived my mother. I've already survived her breast cancer. 

The midwife calls and asks how I am. She is sympathetic but distant. Part of me wishes I had listed the feely midwife as my doctor, and not the matter-of-fact one I usually like best. I read another friend's facebook post about her own loss and I have a good cry. Then I sew. 

Husband comes home and we agree it isn't a problem unless the doctor says it is. I can't even say the word. When we pick up the boys, I give them their expensive ornaments. M is mad that it isn't a toy. H thinks it's the best thing ever. We buy an expensive Christmas tree and go home. M is still sour. 

The next day, I am convinced I have cancer and will die. My friend tells me we will make sure that--IF it happens--it is only a chapter of my life and not my whole story. Then I torture myself with internet images of cancerous breast ultrasounds. It's too hard to tell difference between the ones that are and those that aren't. 

Now I am back to waiting. Tuesday they will biopsy my breast. It will take four days to get the results. I don't know how they will give me the results or if I will have to wait over the weekend. I hope for a clear result. But now I know: the waiting won't ever end. Every year for the rest of my life, I'll go back. There will be waiting, and maybe more testing. There will never be any certainty.