So, today begins the journey I never expected to be on. Cancer. Breast Cancer. Those words are scary to me. My father died of colon cancer at the age of 66. My daughter celebrated her 3rd birthday with her Bomba and just a few short weeks later, he was gone. To me, cancer kills, it took my dad. I reached out as soon as I got the news and a beautiful oyster opened up to me and presented a perfect pearl of hope. Women, in the "club", lots of them, sharing, giving, complete strangers at first, now fast friends. Women, who are survivors, on the path, or sit where I sit, at the beginning of a long a winding road. Women who know women, men who know women. It gave me strength. I decided to blog, because the outpouring of support has been simply overwhelming. It started on FB, and those not on FB my hotmail reached out to. I wanted to answer each and every email and comment, but it's becoming a full time job. I'm tired of typing and/or telling the same thing over and over again. So here I am telling it from the beginning for anyone who wants to read.
The end of June 2009 I felt a lump that wasn't there only two days before. I froze in the shower, frantically felt again. There it was, no mistake, no denying it, clearly there. I think I knew right then and there what it was. I sank to the floor of the tub and let the shower wash the tears down the drain as I asked, Why? Why now? When I'm the donor for my daughter's kidney. This can't be happening. I shook myself free of the fear trying to grip me. I had things to do. My son was graduating from Middle School, my husband was in Pittsburgh starring in Harry's Friendly Service, and Ian and I were flying out after the graduation to see him. This will have to wait until I get back. I stuffed it to the back of my ever busy brain, but the lump...remained. Always there to remind me. I'd touch my chest, and there it was, ever faithful, always there, mocking me. I didn't want to say anything to Ed. I didn't want to ruin his run. So I kept quiet. I told no one. A dirty little secret. How no one ever figured it out is beyond me, I probably touched that lump a million times a day, trying to convince myself that it wasn't really there. It was there, always there.
We returned from Pittsburgh, and I told Ed, not Ian. Ed froze much as I did, and I told him I'd made an appointment with my GYN for my annual well-woman. It was most likely a cyst. I saw My GYN on July 24. She felt the lump. Well, that's a lump, and you will get the mammo I've been on you about? Right? It's probably a cyst so don't stress about it, you are heading into menopause, this happens. But make the appointment right away. Tell them you have a mass, that will get you in faster. Okay. I take my list, put the fee on my credit card because I don't have the money to pay (she doesn't take insurance any more) head to my awaiting car with husband and son and drive toward Boston, to ignore the "Lump". To see my daughter, meet her boyfriend, spend time with my Sister-in-Law and her husband. The weekend was splendid. Annoying my daughter, Sarah with MFO's (Mandatory Family Outings), while her boyfriend, graciously played along. Boston Commons on Saturday, Salem on Sunday. Ian and I stay an extra day to spend with Sarah while Ed hops on a bus to NYC for an audition. I drive home in some the most extraordinary rain thinking "I can't do this!" A voice in my head says, "Can't do what? Drive or the lump?" The lump, it's there, just below the surface, nagging me, mocking me. I hate the lump. I call the next day, July 28 to make the appointment. The first place I call the woman was rude, uncaring, and told me she was squeezing me in the end of September. I was like, "Did you hear Me? I have a mass. My doctor needs to have it looked at right away. September is far away..." She interrupts me and tells me in a cold stern voice, that if she wanted she could really have said there was nothing available until December. That was it, my Irish flew to my mouth. With great hostility I asked if she had ever had a mass in her breast. That she had a long way to go when it comes to talking to women who call in totally freaked out about the mass in her breast that is getting ready to be 'named'. She told me she had indeed had a mass if it were any of my business. I retorted with well that makes me feel very bad for you, because you of all people should have the most compassion not the least. She asked if she could put me on hold, I told her to do whatever she wanted. I went on hold, and I hung up. No way was I going to go there. I crossed the name off the list and moved to the next number.
There the angelic voice of Nicole at Manhattan Diagnostic Imaging Services of New York. Compassionate, concerned, and after putting me on hold multiple times, and each time begging forgiveness, she gave me a date. She had to stack me, over book me, but they would see me. I needed a Mammo, a Sono, and a pelvic Ultra sound. All scheduled on the same day. August 11. Right in the middle of my trip to Athol, Mass. Didn't matter, I took it. Cut the vaca short, and glad I did.
August 11, 2009 11 am.
I am greeted by a rounded check in desk full of beautiful women who are kind, smiling, patient. I fill out more forms than I have ever seen. I wait, and drink more water and hope they do the pelvic ultra sound first, because I really have to pee. Soon after turning in my paperwork, My name is called. The routine begins. Disrobe put on the robe lock your things in here and take a seat, you'll be called soon. I take my seat in the inner waiting room open my son's book ~ Genghis Kahn and the Making of the Modern World by Jack Weatherford. I'm somewhere around Chapter 3. Time passes, but I'm engrossed in the book. My name is called and off I go to ultra sound. Thank God. The ultra sound shows my squatter, sitting there, mocking me still. I look at it, I take a good look and say, F*ck you (in my mind) The tech measures the dirty little bugger. I hate it already. Then the tech says time for your pelvic here, we named it Bob. Insert this down there. Bob? Why not Dick? So the internal fun begins ~ NOT. I HAVE TO PEE!!!!! The tech finally lets me pee. Off I go back to the inner waiting room. I want to name it. It's not exactly a "woman cave" like guys have their "Man Caves", but it is definitely only a girl thing. All of us sitting there, silent, trying not to look at each other. Reading our books, texting, needlepointing, staring into space, nervous. I read, can't remember what I read, but it was fascinating at the time. Time passes, my name is called, I head to the smash and mash room. Mammography. Things have improved with time with these beasts. It hurt but not as much as I remembered. Done in no time. I return to the silent waiting room, oops! knew that was coming, here comes the tech requesting more images of both breasts, you have dense breasts, so we have to go deeper. Great! There ya go, that's the pain I remember. Don't breathe? Okay, how about scream? (I think in my mind) I return to the silence. They tell me to get dressed the doctor wants to discuss my results. CRAP! That is not good. If it were nothing, I'd be told go home enjoy the next year, no you don't need to see the doctor. $$$$$ My price tag just went up. Dr Melissa Sheer. LOVE HER!!! She takes her time, points out the spots that trouble her. Wait! that is not the lump area. why is she pointing there. That's the left breast. What? Calcifications? in both breasts? Why are you concerned about those but not these. Then I get it. The calcifications she is pointing to are clustered. That must mean something. My hearing gets scrambled. What am I hearing? Biopsy. Three!? Two on the right one on the left? What? Okay. Okay, I'll make the appointments. Two days, back to back. Two sterotactic L/R one ultra sound core biopsy on the "LUMP" you b*st*rd. I leave the office stop by check out make my appointments. Can I have this done after I go to Athol? I need a place to sort things out. Athol. It's quiet there. Sally and Pentii won't talk about it, they are good that way. I know they'll give me space. I schedule for August 24. The right on Monday, the left on Tuesday. Easy. done. Forget about "LUMP" for now.
I enjoyed my time in Athol. I sought out interesting little trays and boxes for my bathroom shelves to hide or display things. I have great success. WE battle a bat that gets into the house. And laugh at how ridiculous we are. The lake can't be swum in, ecoli alert. Fine. I'll just drive around the area, take in the scenery. It's so quiet there, the trees absorb all outside this world sound. I sleep in everyday. The geese fly overhead, I take pictures of amazing mushrooms, all poisonous.
August 24, 2009. Monday
I get there at 7:45am. Fill out MORE forms. I wait, I disrobe, I wait. I go to the stereo room, and the adventure begins. I have a way of crashing computers. Don't know what it is. It is a bit like having a black thumb in the garden. All I have to do is walk in the room The machine sees an "artifact" blocking a part of my right breast. What? So after much time trying to figure out what's what, we get the party started. The Stereotactic once underfoot goes quickly, but I'm bleeding. They keep asking if I took aspirin or advil. No. I did exactly as I was told. Not even garlic three days before the procedure, and I have the headache to prove it. So I'm left to compress in the machine for what felt like forever, face-down, feeling ridiculous. Finally I get turned over and more hand compression is applied. I'm asked to sit in the silent room again while the 10 am patient gets her stereo and my core will be done after that. Is it 10 already? I sit with my little round booby icepack compressing. 10 minutes pass. I'm called back in and told the desk made a scheduling mistake, they had actually only put me down for an ultrasound not the core. Would I like to reschedule? NO! I psyche myself up for all of this going down today, and today it is going to be. It ain't my fault the desk person can't read. I handed her the handwritten (neat I might add) rx from the doctor. So work me in, that is your problem. I will not leave the "silent" room until I have everything done that I planned on. They agree to get me in asap. They don't blame me. So soon I return to the room for the core biopsy. Oops. I see the needle. Gotta stop, I 'm freaking out. So i close my eyes, Dr. Melissa talks about my kids, my husband. You're actors? all of you? How cool is that. Opportunity to brag about my kids and hubby. Okay the biopsy is almost done. out comes the needle and CRAP! Bleeding like a stuck pig. Lots of pressure, why won't it stop. Now I have two people pressing down. I'm enlisted. I refuse to cry out in pain or give tears. Dr Sheer leaves to get someone else to help. I look up at one point and I have so many hands pressing on my boob that I can't help but say, "I feel like I'm in an episode of M*A*S*H, and the word mash has a whole new meaning." They stop the blood flow on the core site, they concentrate on the stereo, it stops, but now the core is bleeding again. Back and forth we go for some time. Then after all is said and done, the tech says, I hate to say this, but we have to do another mammo to make sure the clips are in the right place. ARE YOU KIDDING ME/??? So off I go gingerly I start bleeding again, the mammo is done quickly I'm feeling wonky back to the room for more compression, bleeding stopped. I go to get dressed, and the tech helps me into my "sports" bra. I am battered and bruised, and ready to leave so I can finally cry. I get stopped at the check out. The doctor wants me to wait 20 more minutes before leaving to make sure the bleeding has stopped. I wait in the silent room with women looking at me. my mind races with thoughts like, stop looking at me, read your damn book, don't look at me that way. FINALLY, i get to leave. Ed meets me in the outer waiting room where the sound of waterfall trickles in the background. Ever loving Ed, my rock, his concern written all over his face. His love pure, committed, I'm so blessed to have him in my life. I wave goodbye to the beautiful girls at the desk and joke that was so much fun I think I'll come back tomorrow for the left side. Looks of concern and compassion, forced brave smiles come back to me. I know they know I know they are just pretending to play along with my lie. I take one two three steps outside onto the sidewalk, my composure begins to melt, my trauma begins to take over, four five six steps away from the door, the shock begins to wear off, seven eight I begin to cry, nine, I sob, ten, the full brunt of the morning hits me and I can't stop sobbing. Blubbering on and on, who knows what I said, I was suddenly two again and unable to string words together. We get in a cab go home crying all the way. I sit on the couch with my son looking on at me with a look of confusion. He has never seen me this way. I feel so violated. Not since I was raped back in college have i felt this dead inside. I need sleep. I stumble to the bed and sleep for hours. When I wake, I'm bleeding again. Ice and compress for the rest of the night tomorrow is another hard day of work.
August25, 2009 Tuesday
7:45am Back for the left side. This won't be as bad only the stereo today. I show the right breast to the tech who gasps "You're still bleeding" I am? No Stereo today for me. They bind me down, with instructions to call at 12 30, 3 30, and the next morning. If the bleeding does not stop I have to see a breast surgeon. I go home. Defeated for the day. Ice, flat on my back, exhausted.
August 26, 2009 Wednesday
The bleeding has stopped. I get to unbind my breasts, and unlike the sexy scene in Shakespeare in Love where Gwyneth Paltrow unwinds from her binding my dance is ungraceful, painful, and no sex scene in the end. Just an ugly misshaped multi-colored brusied breast. Back to bed. At least I can breathe now.
August 27, 2009 Thursday
We head up to the Credit Union to deposit checks and drop off our premium payment for that almighty insurance coverage. I get out of the subway and begin up the stairs when my voice mail goes off. I knew it was Dr. Sheer. Without looking. I also knew it had to be bad. It was only Thursday. I retrieved the message, my knees began to weaken as I climbed the stairs from the subway below. I hear her voice saying "I have your results. You need to call me so we can discuss them. I'll be here until 4pm. If you can't call until after 4 here is my cell phone number. We need to speak today." Okay, where was the "don't worry" it was painfully not there. Cancer, but where, everywhere? My head is buzzing, Ed is freaking out. I call her back, I get the dentist by mistake. How did that happen? I try again and reach her. The calcifications are beneign, but I'm so sorry Melissa, the cyst...well it's not a cyst, I'm so sorry. Are you there? Melissa? I know this is hard do you want to call me back later? Where are you? Are you at home?
Then everything became very scrambled after that, a lot of info firing at me. my brain ablaze with my own questions. How do I tell my mom? How do I tell Sarah I can't give her my kidney? Oh my God, Ian, how do I break this to Ian? He is entering his Freshman year at a new school! He has to have normal, this is not normal. Am I going to die? Will the insurance company drop me? Teddy Kennedy why did you die!!! President Obama please help us.
The darkest day of my life and believe me when I say this, I have several dark days indeed, but this was the darkest. The good news is ~ you ~ all of you have bolstered me, I'm glad I reached out immediately, I grabbed for support and you all were there. I'm so proud to call you friends. I can meet this "LUMP" head on because of you. You know who you all are.
August 28, 2009 Friday
I had my MRI today, and I broke the machine before I even woke up. They called to say it was down. They would call as soon as it was working again. I laughed. But of course, this will be just one of many moments yet to come. I got in only 15 minutes behind schedule. not bad. I decide to write this blog. I talk to many friends who call with love and support and prayers. I am tired now. Sleep is hard now. But sleep I get none-the-less.
August 29, 2009 Saturday
I wake early and write down all you have read so far. Today I go to a buddhist temple with my dear friend rose to get my chant on. Today I begin to chant in earnest. Today I ask all of you to pray for me and anyone else who is suffering with disease, to pray for peace, to pray for enlightenment. Please think DCIS for me. The least invasive breast cancer. Now, I need a nap
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