This morning finds me wide awake before the alarm goes off. How long can I keep this up? I feel wooden. I am terrified. Why am I so afraid? It’s the unknown, yet known. I’m afraid because deep down, I know what it is; I just don’t want to acknowledge what it is. My hand creeps slowly up from my side, and I feel my right breast. Damn, The Lump is still there. The steri-tapes I was told to keep on for 5 days are really starting to make me itch. It’s close enough to five days, so I can remove them before we go. The anxiety is heavier this morning, and it has spread. It’s now in my lungs and around my heart. It’s up in my throat. I take my morning pills, but I don’t eat. I can’t. The anxiety is a dragon unfurling slowly in my body, cutting off my ability to swallow, to talk. There are moments when I feel like I cannot breathe.
My husband takes my hand. It will be OK. The dragon recedes just a bit. I can breathe again. We get in the car. We drive back to the BDC. I walk up to the front desk to check-in. I have my pink slip; they look up at me. “Oh, OK, we will take that. We will be right with you.” The first Oh, is filled with dread. Then the voice turns perky. My dragon tightens. I sit with my husband and hang on for dear life.
Evelyn, a cute petite brunette with kind eyes and a beautiful smile, calls us and brings us back to an office, where we are directed to sit at a desk. Evelyn is calming; she speaks softly. She says Dr. R will be in shortly to discuss my diagnosis with us.
Dr. R comes in and introduces herself. I know this is going to be bad. I get out my notebook from my purse. I am a visual, kinetic learner, so if I want something to sink in, even doodling will help me if I am seeing or reading something I need to understand. Keywords and doodles help me commit it to memory if someone is speaking. Dr. R said I get copies of all the pathology reports. She’s going to explain what it all means and provide us with a recommendation on treatment.
She went through the pathology report from top to bottom. As my heart constricted, my ears buzzed, and my stomach flipped. My anchor was holding my hand, and my dragon was flipping inside my torso.
I have invasive ductal carcinoma. It’s considered triple negative at this point, but they do not have final confirmation. This means the current biopsy information provided shows this cancer is not receptive to Estrogen or Progesterone. We ask what this means. It means we cannot add hormone therapy to cut off the hormone supply to the tumor to weaken it. They are waiting on the results for HER2 cells. These are cells that, if present, are telling the tumor cells to multiply at an accelerated rate. If this is negative, this means they cannot add an additional medication to chemo that will specifically target the HER2 cells to slow down its growth. My mind translates HER2 cells to God Cells – go forth and multiply.
This is an aggressive tumor. My Ki-67 came out at 80%.
Dr. R said if she were my oncologist, she would recommend Chemotherapy to shrink the tumor, lumpectomy, and then radiation.
She asked about family history, and when our response was negative and she learned of my previous bout with Thyroid cancer, she said we should insist on genetic testing for any of the 7 variants that indicate a risk for breast cancer. Even if we have to pay for this ourselves, as the insurance may not want to cover the cost since I am over 50, get it done. If I have one of those variants, she would change the treatment recommendation to bilateral mastectomy.
She emphasized that even though people say a triple negative cancer is bad, don’t think about that. Think about the part that this type of cancer is very receptive to chemo. This is treatable, this is curable, this is survivable, and this is temporary.
She said I would lose my hair, get a wig, or do whatever I needed to do to feel pretty and keep up my confidence during treatment. I asked about working through this. She didn’t say no, but she seriously did not think it wise and told me I should really use this time to take care of myself. If I wanted to try to work, there are a few who feel well enough to do this, but most do not.
She told my husband that his job was not to always tell me I must have a positive outlook every day. She told him there would be days when she would just need to let everything out, and that was OK. No one can always remain positive every day during this treatment. She has to have the ability to let her feelings out, and you need to be the safe place for her to do that. It doesn’t mean she is losing hope. She just needs to vent.
My anchor, my rock, looked shell-shocked, but he heard Dr. R. He committed to her to let me use him to vent on my down days in this process, and he would understand that I was not giving up.
She asked if we had any questions. I am numb, I am petrified, how, what, how? Why? That dragon of anxiety, the curling gray fog, has engulfed my whole body. My ears are working, but everything thing seems muffled. We shake our heads, no, no more questions. Wait, my husband has a question. I hear it, but I don’t hear it. He is trying to emphasize that I will live. I have cancer. I have a bad cancer. I have a cancer that will require chemo, and surgery and radiation, and reconstruction, and, and, and… I will live. Dr. R explained that Evelyn would return to review more things with us.
Evelyn comes back in, she explains the diagnosis briefly, yes, we understand. Dr. R and none of the oncologists who work at the BDC are part of our HMO, but there is a group under our HMO that works directly with the BDC and the oncologists there. Based on my diagnosis, she has picked one who she feels will be a great match for us, and I have scheduled an appointment with her the next Monday. Now, for a Surgeon, she checked with my primary care physician, was directed to the preferred surgical group, and matched me with who she felt was the best doctor there for my case, and that appointment has been scheduled as well. She has also scheduled me for an MRI in a few hours at the BDC. If there are additional lesions or lymph nodes that show signs of involvement, then I will need to be scheduled for additional biopsy and have those completed before my first Oncology appointment.
Then she opens a 2-inch wide plastic document case and starts going over resources and places to go for research and support groups. She highly recommends the Cancer Care Center, and we really need to get to the first welcome meeting on Friday before we can be signed up for a support group. And here is information on breast cancer. This will help you find local resources for wigs, scarves, and hats; here is information on nutrition. Here is the surgical information, and Sentinel Lymph Node mapping will be done here before your surgery. Here is some information on that for you to read. Here are contact numbers, and if you want reconstruction, let me know as I will get you matched to a plastic surgeon, and here, and here, and here… I don’t know what to do, I don’t know what to say. I’m a statistic, again.
Evelyn explains she is also a breast cancer survivor. She tells us briefly about her diagnosis and her double mastectomy. Her sister too. She emphasizes that everything will be ok. My heart aches; it will never be the same again. My right boob is defective. It’s gone rogue. It’s trying to kill me. Evelyn tells me she is going to hug me now. She is tiny, but I will survive. I am terrified. I can’t believe this is happening. This is not my life. If this tiny thing can do it, so can I. I take some of her strength, I need it for the rest of the day.
We take our plastic document box with the handle, filled with way too much information to begin to digest in a few short hours and walk out of the BDC hand in hand, in shock, both of us silently trying to come to terms with what we have just been told. We have about two hours before we have to be back for the MRI. My husband asks me if I want to eat. Am I hungry? No, no, I’m not hungry. Let’s go home.
I called my boss and told him I would not be there the rest of the day. Explain my diagnosis. So many questions I don’t have answers to yet. Can he tell people if they ask? Yes, there’s no reason to hide this. It’s my boob…. We arrived home, and my family was all waiting on pins and needles. I can’t talk to them right now. I have to tell them, but I am not ready for this. I will send them all an email and then tell them they have to wait until Saturday before I can talk. I will text them all to read the email. My husband, Robert, texts two of the three kids to let them know. I copied the letter sent to my extended family and sent it to them later. I also IM the oldest son to let him know.
Letter sent to the family: “As I am sure all of you have discussed, I found a lump in my right breast right before Labor Day weekend. I already had a follow-up doctor appointment scheduled for the Tuesday after, so didn’t rush to make another appointment.
I’ve had clean mammograms for years, the last being this past January.
On Tuesday, September 5th, I told my primary care doctor about said lump. She felt it out, we both agreed it was most likely a cyst, and she scheduled me for a diagnostic mammogram and ultrasound on Tuesday, Sept 12th.
That led to being scheduled immediately for a biopsy, which happened on Thursday, September 14th.
Today was results day.
The lump is 29 x 22 x 17 mm and is located on the anterior side of my breast 8 cm from the nipple.
It is an invasive ductal carcinoma, grade III
It is hormonal receptive negative, and the Ki-67 indicator is 80%, which means it is a very aggressive tumor, and there is not the additional plus of being able to cut off hormone supply to help stop the cancer.
It is in the early stages, 1 or 2.
The mammogram and ultrasound did not detect any additional sites or enlarged lymph glands.
I have already been scheduled for an MRI today to ensure no other lesions or lymph gland involvement before my first appointment with an Oncologist.
They are also trying to get me scheduled for genetic testing this week, but think it may not happen until next week when I meet with the Oncologist I have been referred to in my network.
The consulting oncologist we met with this morning advised if I were her patient, she would recommend chemo first, as this type of cancer responds well to chemo, shrinks the tumor, and then have a lumpectomy.
If my genetic testing comes back positive for any one of 7 variants for breast cancer, that would change from her original recommendation to double mastectomy to prevent further occurrences.
I will be losing my hair, and I may need radiation treatment, but that is still to be determined by the next scans and the genetic testing results.
I have a great medical team that is at my beck and call should I need them, even if it is only to help me with the doctors that are covered in my medical group or answer our questions.
I have been referred to support groups here as well.
The consulting oncologist and my cancer coordinator both emphasized this is very treatable, curable, and temporary.
I am in good hands, and this is being fast-tracked as much as possible so they can implement a treatment plan sooner rather than later.
This is all the information I have right now. I am not ready to talk about this, and I still have to return to the imaging center for the MRI. As soon as I know more, I will update you all.
Please do not call me today or tomorrow. I have a lot of reading to do, and I have a full-day symposium scheduled for tomorrow that I really need to attend for work.
This weekend I will make time for phone calls. I love you all, I thank you all for your understanding and support.
Love you all VERY much.”
I head to our bedroom and remove all my jewelry. MRI, no metal. I must remove the tiny stud in the second hole in my left earlobe. It’s really supposed to be a nose stud, but I love the tiny blue chip of color that barely winks from my lobe. I drop the stud. I can’t find it. Fuck my life.
Of course, my mother did not read the messages in order, so she called. I can’t answer. I can’t talk; we have to go back for the MRI. Then my mom pocket-dials me. I don’t know if this is a pocket dial, as I still cannot answer. I want to yell at her,” READ THE FUCKING EMAIL”. I want to yell at the world. I want to stop the world and get off until this whole thing is over. I want to wake up from this nightmare. This is NOT happening to me. I already had my cancer. It was easy, it was stressful, I lost my sense of taste, I would forget what I was doing, and I ruined a perfectly good pot and made an egg in a shell catch fire and burnt teabags, but I aced that cancer! I’m cured. I should not have to do this again. Why do I have to do this again? FFFFUUUUUUUUUUUUCCCCCCKKKKKKKKKKKKKKKKKK! I can’t breathe.
My husband takes my hand. The constriction in my chest eases just enough so my lungs can expand yet again. We have arrived back at the BDC, and now we head to the other door. The door that says to me,” YOU HAVE CANCER”. I am no longer just the woman coming in for my annual exam. Now I am the woman with cancer. Like I am defective. I didn’t do things right, so now I have cancer. I should have exercised more, lost weight, managed my weight, eaten better, and taken vitamins more regularly. Only drank red wine, not the bubbly or the whiskey…. I am bad. I have cancer. It feels like a walk of shame.
As we walk through the door, I hold my head up high.
Sign in. Wait, my name is called, and fill out more forms. Wait. Called back. I am taken to the dressing room, and the nurse explains how this will go. This will be an MRI with contrast, so once I am changed, all clothes off, into the provided tie waist pants, and the gown tied in the back, I will be taken to a room to have an IV catheter started. Once that is done, then I will have the MRI of my breasts, chest, and armpit area done.
As I prepare to change, the nurse brings me some socks to use as well. She says it’s cold in the MRI room. I then wait to be taken for the IV catheter. When the phlebotomist comes to get me, and we go to her little room, I ask her if she has a warm blanket.
“Oh, are you cold?”
“No, but if you want to be able to find a vein, that will really be helpful,” I as I hold up my arm and show her my nonexistent veins.
She agrees; let’s warm up that arm. As we wait for the warm blanket to work its magic on my veins, I give her the spiel on how this must go so the vein does not collapse. She takes it all in and says, we’ll let’s start you in a reclining position first, and we will go from there. She moves the chair around a bit so we can recline it, and then she competently goes to work, finds a vein, takes her time, and in it goes, no hesitation, and we’re done. I thank her for doing it in one fell swoop. She thanked me and said all the info I provided helped her, too. Back to the small waiting room off the changing room, with the warm blanket held to my chest like a life preserver.
The MRI tech comes and gets me. We go into the MRI room, and she explains how I will lay on the board with my breastbone positioned on a small pad on a bar between two rectangular openings where my beasts will hang. She will place a pillow under my feet and a small support under my pelvis to help relieve some of the pressure on the breastbone. My arms will be extended above my head like I am trying to fly like Superman. One hand will hold a “ball” that will be my signal if I am in distress, squeeze the ball. There will be three images taken without contrast, then the last image will be with the contrast. My gown is removed and I lay down on the table, we adjust my placement. I am provided with earplugs and earphones. The tech drapes the gown over my back. She places the ball in my hand. She hooks up the IV to the contrast. All set? Thumbs up. My breastbone hurts. I feel exposed. I feel like I am not a real person. It’s hard to breathe. The bed is raised, moved back, and then the tech asks if I’m ready. No, but I don’t think I will ever be ready for this.
“The first scan will last 4 minutes. Please try to breathe normally; do not take deep breaths.” Whir, cachunk, cachunk, cachunk, rrrrrrrrrrrrrrrddddddddddddttttttttttt. Da tat, tat, tat, and on it goes, sounding its loud cacophony as images of my upper torso, my breasts, are made. “OK, that was good. The next image will be 6 minutes. Here we go.” And more noise while I lay there wondering how I got here. “One more, and then we start the contrast.” Cancer is not dignified. You are exposed, raw, and hurt. Fear curls throughout you while you are bombarded with tests, x-rays, imaging, and chemicals. You bare parts of yourself to strangers as if you do this every day. Breathe. Do not cry now. Fucking lump. “And now the contrast. You might feel a little cold. This scan will take 20 minutes.”
I am finally done. My breastbone feels bruised. The tech removes the catheter. They use the stretchy cling tape instead of regular bandage tape. Nice, no itching. I get dressed, and we go. I can’t do this. I am not strong enough. I’m just a little frightened girl. We go home. There is so much information. I feel like I need to know it all before we meet the Oncologist. I set myself up on the sofa with my “Cancer Box” and started reading.
I am overwhelmed. This is too much. IT’S TOO FUCKING MUCH. I crawl into my husband’s lap, and he holds me while I cry. It’s loud, sobbing, snot dripping, heart-wrenching, face swelling, can’t catch my breath agony. Life is not the same. Life is hard, life is short, life is unfair.
I don’t eat at all that day. I can’t. Finally, it’s bedtime. I take a shot of Nyquil to help knock me out. I want, crave, and need the oblivion of sleep.
Life is wishing for oblivion
