It’s been 2 weeks since I posted a journal entry and during that time I’ve been living my life hard. Lots of hikes, swims, reading, laughing and loving. It’s been amazing. Over the last few days, there’s been a shift. I’m now within a week of treatment beginning and that’s been weighing on my mind. It’s as if up until now everything has been a dream. After next Thursday, reality sets in. I’m finding it very hard to see past that day or make any choices. It’s as if nothing exists after that. I’m sure it’s the uncertainty of what I will be like. I’ve never had any surgery in my life and the idea of being put under and intubated frankly scares me a bit…ok, I’m terrified. I don’t know what recovery will look like and I refuse to believe that I will be down long, while at the same time I’m trying to be realistic because I know I have the propensity to over do it. One of my doctors recommended the book Living Beautifully with Uncertainty and Change by Pema Chodron. It’s been super helpful, but I still can’t shake the feeling that after Thursday the beautiful bubble of my blessed world is going to burst. I’m not good at being afraid…
On Tuesday I headed up to the Portland VA for my first appointment and consult with my cancer team (I need to keep using and saying the word cancer to make it real). I stopped along the way and got coffee and mojito gummies. I had no idea those were a thing but thanks to Starbucks, I now know that they are and my life is so much more glorious for it. The Portland VA is on the same campus as OHSU and Doernbecker’s Children’s Hospital on top of a hill surrounded by trees and hiking trails and has an amazing view of Mt. Hood over the river. If I could convince them to do my surgery outside, I would but I can see my doctor’s face now. The parking situation left a lot to be desired but it gave me the chance to see all the old vets sitting in a glassed in room smoking. I sure hope they vent that adequately. Anyway, I digress.
The first person I met was Heidi, my cancer nurse advocate. She met me in the waiting room to accompany me on my appointment and answer any questions I might have. We did a brief intake (“Hello, my name is Michelle, I’m 41, I have cancer.””Hello Michelle, my name is Heidi, I’m your person throughout this whole thing.” “Hi, Heidi.) She was wearing a Wonder Woman lanyard and that made me happy. Even my person is on my team. Next, I met my doctor, Dr. Kwong. All I can say is that I really liked her. I really like Heidi too and Christie, Dr. Kwong’s RN. Dr. Kwong was competent, compassionate, knowledgeable and gave me lots and lots of information and options. I never felt like she was pushing one thing over another. It was completely up to me. She was there to make sure I made the best decision based on current facts. I super appreciated that. She drew me a fabulous diagram of the options with lots of pictures. I asked to keep it. It will now go in my unicorn scrapbook. Oh, about the unicorn thing.
Dr. Kwong told me that because of all my factors (young, no close family history, super good health) I was what they referred to as a unicorn. I like that and am accepting that as my own. She also went through the entire pathology report explaining all the things. We did discover that I was mistaken when I thought I was ERPR negative. I am actually positive which is good because that opens up some treatment options and also makes it less likely I have the BRCA1/2 gene mutation that will make it likely I will get breast cancers and ovarian cancers numerous times throughout my life. Yeah, no thanks.
The appointment was full of a lot of laughs because life is too serious and if you can’t have a good time while fighting a deadly disease than why bother? We talked about and are moving forward with a lumpectomy while at the same time arranging for the BRCA genetic testing. Dr. Kwong described the whole surgery and what happens at it. Her doing a lot of pathology and running back and forth testing tissues. Me doing a lot of sleeping. I think I get the better deal here. Prior to the surgery, OHSU will put nuclear dye and some bluing in the nipple. Hence I am a radioactive unicorn. At least I will be after the surgery, but I’m practicing now. I couldn’t help thinking of the fembots in Austin Powers. Yep, I’ll have superhero powers yet.
A lot is still up in the air. The genetic testing takes about 30 days to get done and then about 2 weeks for results. If that comes back positive, I will be saying goodbye to several of my body parts. “It’s been a good run, but I’m not going to allow you to kill me. Sorry about that. Yes, I’m that fickle. I want new ones that aren’t homicidal.” If there is cancer spread either through the breast or into my sentinel nodes (that is really the coolest term ever and the physiology of the lymphs is my new favorite thing), then we will come up with a plan from there. After there might need to be radiation, hormone therapy, chemo, etc but we will cross that bridge when we get there. Apparently, there is an algorithm that the oncologist does that determines best next steps. It’s like a “Plan your own adventure”. I’m also looking into alternative/complementary treatments as I am really not interested in just going blindly into the conventional medicine ideology of “poison” it. I have no intention of letting the VA make me worse. So that’s the update for now. Oh, yeah, surgery is 8/3/2017. Pre-op testing next Friday 7/21.
I’ve spent the week waiting and wondering. I called my cancer nurse advocate last Friday. She was out, but a colleague called me back. He told me I should hear something by Wednesday or Thursday of this week with the holiday and all. He said that conversation would enlighten me about next steps. So, this week…I waited and waited and…waited. Finally, today at 4pm I called again. I need to be proactive and not just let the VA take their sweet time. This is, after all, MY LIFE we’re dealing with. I reached one of the care coordinators who told me my advocate would be out until Monday but he’d be happy to help me. I explained that it has been almost 2 weeks since my doctor told me I had cancer and that I was still waiting for what was next. He looked at some notes and said that my advocate (affiliated with Roseburg VA) would have her counterpart (affiliated with Portland) contacting me. He also stated that the general surgery team had left me a message on Monday. WHAT?? Do I have to mention how many times I’ve asked the VA to call my cell? Probably not. It would bore you. Then in the back of my mind I remembered seeing that little number on my home answering machine. 7 it said. I remembered it was 6 before but now it was 7. But it wasn’t flashing so the message must have been retrieved by my dad or Dean. It couldn’t have been for me or else they would have said something. The care coordinator tried to reach out to the general surgery team but he kept getting voicemail. That’s one of the things that kills me about the VA, you can never reach a doctor or a clinic directly. It all has to go through a switchboard. Apparently as he was talking to me, he was typing my Portland advocate at the same time. He apologized and said that she had to leave to go catch her bus but that she promised to call me first thing in the morning. A dark cloud just dropped when he said that. By all means, go catch your bus. I’ll just sit here waiting.
I got off the phone and rushed home. That darn 7 burned into my mind. I checked the machine and sure enough it was a message for me. Now it was 4:45pm and the chance of reaching anyone was small but I called and left a message. Then I went for a hike. I was super surprised when I was driving to my hike my phone rang and it was the nurse at the surgeon’s office. To make a long conversation short, here’s the cliff notes. 1)she had my home phone listed as my cell phone 2)they were still waiting for the films from my mammogram/MRI (Portland VA called and asked me where I had been seen on 6/27; the nurse stated the report showed that they were only requested 7/3) 3)she questioned my request for a bilateral MRI (after all why would I want to know if only one breast was affected) and my request for a BRCA test (3 negative but no concern there…). She did say she would run it by the doctor. 4)If they didn’t get the films in time to see me on Tuesday, they could see me the following Tuesday. Apparently they only do surgical biopsies on Tuesdays.
So after hearing all this I was super anxious and upset. I wanted to snap and yell about all the waiting and how awful it was. I was able to hold it together. She told me she’d call me in the morning. I got off the phone and stared at the East side of Mt Pisgah and came to a realization: I do have control in this process. I can ask for what I need/want. I can get a second opinion. I can be my own best advocate. AND I can treat everyone kindly and with love. They are part of my process and if I can wrap them in love I can wrap myself in love. No, they are not going through what I’m going through. Yes, they might say things that feel inconsiderate because I’m super sensitive and scared and uncertain. But, it’s not going to make my journey any better, any easier if I can’t great others with compassion and love.
What I am finding hardest at this point in my journey is finding the words. When I first heard the word “cancer” from my doctor, my mind seemed to put this protective blanket around my thoughts. I went to pray and realized I couldn’t. I wasn’t really angry just bewildered and felt I had nothing to say to my Higher Power. Guess my years of giving the silent treatment as a coping mechanism for my fear and hurt hasn’t gone away. Then, I needed to find the words to let my parents and my sons know. Part of me just kept saying, “I don’t really need to tell anyone. I’ll just get through this and nobody will know.” That’s part of the denial I guess. I choked out the words to my parents and my heart just about broke as I watched my oldest son go pale when I told him and his brother. Dean’s responses were classic and have been written into my “Funny Things that People Say to you when you Tell them you have Cancer” notebook. From the mouths of babes. After that I had one more conversation that made dread sit on my heart. How do you tell someone in a newly blossoming relationship that, “Yeah you can keep going out with me but it’s probably going to suck”? I couldn’t breath as I tried to force the words out giving him the choice I felt was fair.
Now I have told everyone through social media and the support has been tremendous. I didn’t want to say anything but I won’t say the love shining back at me isn’t worth it. Makes me wonder why we don’t shine this love at each other and accept this shining love without a health crisis. Everyone, please love each other today. Please tell those special people what they mean to you. Take the chances. Ask that cute guy or gal out. Go on that trip. Take that hike. Just love fully and deeply. Peace until my next update.
Just the facts, Ma’am:
C-Day, aka The day my doctor called me and told me I have breast cancer: Friday, June 23rd, 2017
Invasive Ductal Carcinoma (IDC) – 80% of women with breast cancer have this type so I’m not special
ERPR Positive!! (At first, I believed is was negative but it’s not. This is a good thing).
Good predictive factors
Isolated to the one spot: Unknown
In the lymph nodes: Unknown
Next step: Meet with surgeon and oncologist at the Portland VA (affiliated with OHSU woo-hoo) to find the extent, the spread and discuss treatment
Prognosis as we know it: Sucky next 6 months or so
Fatal: Not an option
That all said, welcome to my blog category. I appreciate your support and words of hope and encouragement. Thank you for visiting.