All posts by Administrator

Quick Update

I’ve healed from the lumpectomy fantastically. Now on to next steps. There are so many options in the current world of breast cancer and I am delirious that it’s 2017 and I get to design the path that’s right for me. I did a full intake with Dr. Kelly (naturopath) and she designed a protocol that will maximize my body’s natural ability to fight off disease and minimize effects of the conventional medicine that makes sense for me. I take a number of supplements each day, including curcumin, seaweed, mushrooms, Vitamin D, Vitamin B, Fish Oil, probiotics, flax seed and melatonin. I’m practicing meditation, yoga and saying no. Of particular importance for me is I’m learning to stop covering my vulnerability and uncertainty with distraction. But the tasks I use for distraction make me successful, I argue. They also keep you from being in touch with yourself and truly finding your piece. I’ve lived my entire adult life in stressful jobs. Hypervigilance, adrenaline dumps and imbalanced cortisol has been my normal. It’s quite possible it’s contributed to my getting cancer at 41. Now I’m being asked to recognize that this physical/mental/emotional state is not normal. It is not my body at balance. I’m having to slough off these layers of self-protection and it’s super uncomfortable. I’ll speak more to this personal journey later.

Radiation. That’s the next step. If I would have chosen a mastectomy, radiation might not have been necessary. But, I chose breast conservation surgery (lumpectomy) and that goes hand in hand with radiation. This will sterilize the entire breast area and the sentinel lymph nodes. Basically, if there are any micro-cancers hanging out in there, they will be eliminated as well as their pathway into my system. Is this risk free, obviously not. It’s radiation after all. It’s like a high-powered x-ray directed meticulously at one area mindful of decreasing exposure to other areas. Thankfully, my cancer is in my right breast which eliminates exposure to my heart. It does not, however, eliminate exposure to my right lung. I’ll talk more about the radiation later as well. This was supposed to be a quick update lol.

I met with the radiation doctor at Willamette Valley Cancer Institute. She was magnificent. A competent, intelligent, compassionate, knowledgeable, beautiful woman around my age. She knew things, answered all my questions down to the most hypothetical and was willing to give professional and personal advice. I start 10/23. I have EMS World in Vegas to go to 10/15-10/21. I DID not want to miss this. All my EMT CEUs, a focus on community paramedic programs and an entire tract on event medicine!!! I’m going to be there. So, on my oldest son’s 22nd birthday I begin a 30 minute a day, 5 day a week, 6 week course to cement myself as the eminent Willamette Valley Radioactive Unicorn. Until then, I’m continuing to conquer the world (but not just to distract myself).

All the Appointments

It’s amazing to think of all the appointments I’ve had since my last update on 8/19. Good thing I have my calendar to remember them all. First appointment was my post-op on 8/23. This appointment was made with Dr. Knapp, the resident doctor that helped Dr. Kwong with my surgery. It was made two weeks ago. The purpose was to see how my surgery was healing up. I also needed to meet with the oncologist. In true VA fashion, general surgery only sees patients on Mondays and Wednesdays and oncology on Thursdays. So, I got to stay another night in Portland for my two 1 hour appointments.

I get to my post op and meet with a very nice PA who looks at me kind of funny when I walk in the room. “What are you doing here?” she says. Then she laughed stating that I was too healthy and she would need to look at my file to figure out what in the world I was doing sitting in front of her. Once she read up on me, she knew why but still determined I was way too healthy to be there. Then she told me that Dr. Knapp wasn’t working that day. Ok, then why was an appointment made with him? Sigh…long story short, she got in touch with Dr. Kwong who was there but couldn’t see me that day. She knew I would be around all evening and into the next day so if she wanted to, I was in Portland. She never did. The PA checked out the surgical sites and was thrilled with their healing. I was cleared to go to oncology. Yay!

I was also cleared to go spend the rest of the day hiking since I couldn’t check into the hotel until 3pm and it was only 11am. At first they had me scheduled to stay in-house, which I determined was a double hospital room. Thank goodness another veteran had a hotel room booked and she wanted to stay in-house. We traded. I also learned that I need to have a “support person” or even a “support animal” come up with me and I can always stay in the hotel. I believe Rock counts.

I found a beautiful resource in Lake Oswego, Tryon Creek State Park and was guided to a series of trails that made a 7 mile loop. It was a gorgeous day AND the crisis phone didn’t ring once. It was so nice of people to not have kid crises while I was wandering around the woods. Not that I wouldn’t have been able to step off the path, help with intervention and then get back on my way. I’ve done that numerous times. I finished my hike right about 230pm which was perfect for heading over to the hotel.

Yes, I did go to Bannings and get treats again. I got another piece of Marionberry Poppyseed cake and a Raspberry Lemon cake. Both were delicious. For those who wonder, I had salad for dinner and don’t forget the 7 mile hike.

Next day, I headed back to the VA for my oncology appointment. Met Dr. Kittai, a 2nd year resident. Heidi, my nurse advocate went with me to be a second set of ears. Dr. Kittai was delightful as he explained all the options in my future. I wanted facts and number and research and asked a million and one questions. Several he would have to consult with the others to find the answers to. I do believe I thought of just about everything someone could ask no matter how random. He was very patient. Then on to the exam.

I don’t have a problem whipping my shirt and bra off anymore, in front of anyone, anywhere. Cancer has stripped me of any modesty I might have had. I didn’t have much to begin with. So, I got on the crinkle paper table and went to pull my shirt off. “Not yet,” he said visibly reddening. I’ll remember to wait until I’m told to take my clothes off next time.

After my exam, we talked next steps. I would be referred to radiation (which was already in the works but referred to OHSU which is not going to happen. I AM NOT driving to Portland 5 days a week for a 15 minute treatment). Several messages were in to refer me down to Willamette Valley Cancer Institute in Eugene. I particularly like the one my PA left stating, “She is a single mother of two boys living near Eugene and working two jobs. This is an incredibly appropriate referral.” It made me laugh that it’s considered a “lifestyle” referral. Working is a lifestyle lol. Dr. Kittai also scheduled an onco dx test which will test the tumor for certain elements. These elements help determine treatment steps after radiation, for example chemotherapy and hormone therapy or just hormone therapy. It will be about 30 days before the results are back. He talked a lot about side effects, long term issues, things to watch out for like bone pain (breast cancer likes to spread to the bones) and medications. It was a lot to take in. I kept smiling.

When we were finished, I got in my car and began the long drive home. It was in this silence that I began to fall apart for the first time. I had too much going on in my head. I was trying to come up with too many answers. I was trying to get control of things that were uncontrollable. I felt completely overwhelmed. I had to go into work and I was super grateful for the distraction. I just needed to not think about cancer just for a little while.

Lunch is hot

Exercise: Write a scene in which a waitress is forced to handle the lunch rush alone. At the same time, her boyfriend, the fry cook, begins to argue with her.

Ding.

The sound of the bell crashed through her body bouncing off the back of her eyes, careening down her sternum and slamming into her heart.

Ding. Ding.

She shut her eyes closing out the too bright light coming through the curtainless windows joined garishly by the rays of the open sign. She wished she could stay in the darkness behind her lids.

“Ma’am. Excuse me, Ma’am.” A bony hand reached out and grabbed her arm. Her eyes flew open but it took a moment for her eyes to lose their loamy veil.

“I need more coffee,” Ray, a 78 year old, regular said his voice small and tiny. She had tried numerous times to reconcile this small, shriveled old man with the stories of a Korean War hero she had heard since she was young.

“Of course,” she replied gingerly taking the cup from his hand, his fingers so fragile she was afraid if she was too rough they would snap off in her hand.

Ding. Ding. Ding.

She turned slowly towards the sound desperately wishing she could go back into the darkness. But she couldn’t. Peter glared at her from between the polished stainless steel and the papers clipped above flapping from the force of the heat in the back.

Ding.

Four large steps and she was face to face with him. She forced herself to hold his gaze even though her insides shrank into her feet. She had only asked for what she needed. He was the one that was being unreasonable. He had no right to judge her or to make her working hours hell. After all, there were so many of them. She was tired. Her feet hurt. Every cell in her body wanted to run out of the door, jump into her VW and disappear. But she wasn’t going to run. Not this time. She held his gaze, grabbed the two plates and turned away.

The front door bell tinkled as a family came in. Dressed up they must be just coming from church. Great, the Sunday crowd, she thought knowing that this family was just the beginning. Damn you, Jeff. She couldn’t believe that he had called five minutes before his shift apologizing but telling her that he wasn’t going to be there.

“I having a seeing problem,” he said laughing at his own words. “I can’t see myself coming to work.”

She had met his words with silence. Experience told her engaging with him wasn’t going to get her anywhere. She just clicked End.

“I’ll be with you in just a minute,” she said breezing by the family. She placed the plates in front of the young lovers at table 3. “Thank you,” the handsome dark haired boy with the grey eyes said not taking his gaze off the beautiful blonde sitting across from him.

“Can I get you anything else?”

“No.” Even her voice was beautiful. Rebecca pushed her own dark curly back behind her ear her wrist brushing the grease on her cheek.

Ding. Ding. Ding.

She sat the family and greeted the new patrons who had come in. She headed back to the bell, out of breath. She realized she was still holding Ray’s cup. Shit. She turned and completed that task.

Ding.

She stood face to face with him.

“We need to talk,” he spit between his teeth.

“No, we don’t,” she found the strength to say.

She served the food. She refilled Ray’s cup again. She came back to the door greeting even more customers. “Follow me,” she said smiling only with her mouth. Turning, a reflection of flames in the front windows greeted her.

Pathology and Genetics (8-19-17)

Dr. Kwong called on my pathology from surgery. Good margins and no lymph involvement. Stage 1. Thank you, God. She believes she got it all and is super happy to hear that I am healing well and am virtually pain free. She is amazing. Although she removed a chunk of me, the two sites are healing without any divots. The lines are straight and I feel good about my presentation. It’s a far cry from back in the day when the doctor (generally a male) just hacked a woman’s breast up without care for how it looked or the tie in between our breasts and our femininity. I’m glad it’s 2017 and I’m glad I had Dr. Kwong. I hope Dr. Knap learns a lot from her.

My geneticist also called and all 9 panels that tested for mutations increasing my likelihood for cancer, including BRCA 1 and 2 came back negative. I don’t have any more of a chance for this returning to my breasts or several other places than anyone else. Awesome.

What’s next? I meet with post-op and then the oncologist for my algorithm for treatment steps. Most likely radiation. I also met with my naturopathic doctor, Dr. Kelly Fitzpatrick. I love her, by the way. It was like a doctor and therapist session all at once. She truly has a mind, body, spirit approach. That’s the way it should be. I am more than my vitals. I am more than my cancer.

Flip Side: Part 3 (8-19-17)

Back in pre-op, we were just waiting for them to clean up the OR and it would be my turn. The anesthesiologist came to talk to me and we discussed everything from my past medical history to any aches and pains I might have in my joints. I had been having some problems with my left knee and hip when I ran but I didn’t mention it. I saw Staci give me The Look when I didn’t disclose. I quickly looked away. Laura, my surgical nurse came to put an IV in. I have great veins but once again my left side decided, “No blood for you!” She got the needle into the vein at my wrist but my blood fountain refused to flow. She explained to me that anesthesiology wants the IV put in as distal as possible in case there are issues with swelling. It it’s too proximal, they can’t go more distal at that point. Well, my veins chose not to give a rat’s butt about what they wanted and she had to get permission to put the IV in my cubital fossa (great word for elbow armpit). I also had to answer the same three questions for a half dozen other people (full name, date of birth, what procedure are you having done today and where). I met everyone from the resident doctor in training (Dr. Knapp-who by the way, Staci could not keep talking about how funny it would have been if he was the anesthesiologist. I didn’t get it at first, but Dr. Nap, putting you to sleep, very funny), all the nurses, anesthesia, Dr. Kwong, everyone. So much attention just for me. I felt so loved. With the IV in, the OR clean, we headed in. Someone warned me it was about to be like a Nascar pit stop once we got in to the room and they were so correct.

As I was being wheeled in now fully undressed except for my crab socks, my anesthesiologist at my head, she said she was going to give me a little something. In it went and the realization that I don’t like anesthesia began. At first it hit my feet. It felt like pressure but from the inside. Then it moved into my chest, squeezing, pulsing and weird. Just as I was about to tell her that I was having an allergic reaction it dissipated and I felt nothing. She told me it was morphine and gave me another shot. Probably way more than I needed considering I eat pretty clean, exercise a lot of toxins away and hardly ever take medications, even NSAIDS. Now in the room, it was like Nascar. I had two people at my legs wrapping them with these massaging pads. Dr. Kwong and Dr. Knapp were consulting in the corner. My anesthesiologist was explaining that she was now going to put a mask on me so that I could get oxygen saturated. I did exactly as she asked breathing in and out fully. I’m sure I sated at 100%. She kept telling me I was doing a really good job and it didn’t seem patronizing. I started to think about being knocked unconscious and the major surgery I was having and a bit of panic set in. I just allowed myself to have the thoughts and feel the feelings and breath the O2. Then she said, “I’m going to take care of you” and that’s all I remember until I woke up.

I guess things took a little longer than anticipated due to training Dr. Knap and pathology being backed up. Staci kept all my “people” informed of what was going on. She rocks. Instead of 3pm, it was 530pm when I was rolled into post op. Everything is very fuzzy when I woke up. Staci had already had me authorize her being there to hear all the doctor’s orders and things because she knew that my mind would be in the La Brea Tar Pits. At the time, I felt like I was hearing things but time would reveal that very little came in as real. I needed to go to the bathroom and I felt like I was walking forward but I was crab stepping sideways. I also peed bright Mountain Dew neon. Dr. Kwong had warned me thank God. It eventually dissipated to Baja Blast blue green and then went away. Had to get rid of all that nuclear radiation. Dr. Kwong had also prescribed me painkillers and I wanted to read the instructional pamphlet before I just blindly took them. I was already concerned over my addictive personality and taking opioids, and I had talked to her about it. I figured if she still prescribed them, then they were what she felt I needed. But that didn’t mean I wasn’t going to read the instructions. Of course trying to tell Staci I wanted those all I could say was, “I want the…the…the words.” Good thing she could interpret anesthesia. I had little pain but did not like the way the anesthesia made me feel. In fact over the next few days that was what was the worst trying to get that out of my system. It was probably too much and I just really didn’t like it. Made me feel super slow physically and mentally.

Once I was cleared, Staci and I headed back to the hotel. Again, she was super right in having the VA set up a room for that night too just in case. I got into bed and sat there watching something on TV (I don’t remember what it was) and eating Triscuits, Greek yogurt, string cheese and my leftover Marionberry Poppyseed cake (the most divine food in the world according to my foggy memory). Staci gave me my meds every 4 hours throughout the night. Have I mentioned she rocks? Next morning, we packed up and headed to eat at the Greek place that Dr. Kwong recommended. It was also divine. Staci drove us home and I was greeted by my loving family. Dad was wearing his new pink watch and Dean had a pink sweatband around his wrist. The next few days I took it easy, walked a bit and weaned myself quickly off the narcotics. I really never want to have general anesthesia again.

Flip Side: Part 2 (8-9-17)

Staci and I made our way up to the 3rd Floor for check in. Walking past the Starbucks stand where the gal makes the most amazing, dark brew coffee almost killed me. It didn’t matter that it wasn’t open yet. I knew the potential of that stand and I knew that I wouldn’t be having any coffee until much much later in the day. I hoped I wouldn’t get a caffeine withdrawal headache. Then I would have to admit that I was actually addicted to it.

We got lead to preop and I got to put on the gown (opening to the back). It was a funny little gown with a slit in the front covered with a pocket. “For a cell phone,” I asked. Nope, EKG electrodes. Too bad. Staci and I figured it would be a great spot for a phone and ear buds. They let me keep my sports leggings and socks on so I was happy especially since I would spend the next few hours being wheeled all over the VA and OHSU. My throne arrived and off I went being pushed by a former Atlantic fleet Machinist Mate from the south with a long gray pony tail and a penchant for trying to push the chair and walk beside me at the same time so he could talk. We had to go all the way across the skybridge to OHSU’s breast cancer unit and it felt like we went 5 miles. I had my nice warm blanket on my lap and I was super happy for it because it almost became a security blanket for me throughout the day. I felt so exposed being wheeled around. I wanted to pull it up over my head.

Once at OHSU, Staci went to go get much needed breakfast. She also went to go get some coffee that she wouldn’t have to drink in front of me. There was worry that I was going to leap out of my chair every time we passed a coffee shop in the hospital. I contemplated mugging the woman who got in the elevator with us but she admitted to only drinking tea. At OHSU, I left my chair and laid on the couch with my blanket wrapped around me and my crabby socks reading one of the celebrity mags Staci was wise enough to bring for me. After all, who can think about the fact they are about to slice me open when I need to worry about Ben Afflect’s new love and Angelina Jolie’s custody battle? At OHSU, they used an ultrasound to put in a wire locator. It was very obvious that the doctor and the ultrasound tech didn’t get along. I almost asked if they would like a mediator to work through their issues, but thought better of it. Holli, the RN was super sweet and laughed a lot. She told me I was super cute. Everybody loved my socks. I got the wire lead put in and she gave me an extra dose of lidocaine when I asked her if it would eventually stop stinging. A blue dye was put in to help locate the lymph nodes and that’s what hurt. I would be really grateful for that extra dose later as things got backed up due to the Nuclear Medicine Doctor’s concern about my girl status.

With a beautifully taped wire protruding from me, I was wheeled over to Nuclear Medicine for my atomic gamma injection. Wheeled into the room by a super nice tech named Jim, I was greeted by another giant machine that looked like an MRI. It had the tray you lie in and the giant wheel. Jim asked if I wanted a woman in the room and I declined. Then Doctor Lee came in. He looked at me and looked at my chart then looked at me then said, “Where’s her pregnancy test? Where are the results?” I must have just screamed fertile to him. I told him I had just had one yesterday in Eugene and there was one on file from the 21st, but apparently Eugene VA and Portland VA don’t have synced computers. He adamantly refused to work on me until he had one in his hand. So, off Jim and I went to the lab where I happily peed in a cup once more. Then, we waited…and waited…and waited. I could have gone to Walgreens, bought a kit, peed on the stick and had my results ten times by the time the lab finished with mine. Jim apologized and said it could take an hour. So, I sat in my chair in the waiting room of nuclear medicine happy that I wasn’t any of the other very miserable people waiting too. I eventually curled up in my chair, pulled my blanket up and fell asleep for a bit. Jim came back. I looked at him and said, “I’m still not pregnant, right?” He affirmed and apologized again for the wait. I have to a say that I’m glad Dr. Lee was playing it safe. It’s always better when a doctor does that.

So, back in the room I go. Once again, Jim asked if I want a woman in the room and I say no. He also admits to me that they do very few women here. That’s comforting knowing the doctor is about to stick gamma rays into my nipple. I asked about topical numbing and the doc says they don’t use it. Again, thank you Holli for the extra at OHSU. Doc puts atomic particles in sugar water at 3, 6, 9 and 12 o’clock. Stung like a hornet for about 2 seconds each. Then we waited. Takes about 20 minutes for the particles to light up. Jim let me stay lying in the tray and turned the lights down for me. It was very soothing other than my boob feeling like it was the size of Manhattan. After about 15 minutes, Dr. Kwong, my surgeon, came in and we talked a bit about the procedure, pain management, and then great eateries around Portland. She highly recommended a gyro place not far from the hotel. For the five millionth time, I said my name, social security number and the procedure I was having done. She initialed where she was going to do her work and I got to rest for a bit longer.

When Jim came back in to check the dye, he put the screen right above me and I lit up like a candle. I asked for him to let me see and he did. The doctor came back and had this little rod that he put on my skin and the rays would all clump up and glow. When the rod wasn’t there, they just floated around like fire flies. I was truly atomic sparkle girl. The lymph nodes clearly showed up and we were ready to move to surgery. Dr. Kwong also warned me that I would pee bright green for a while as the rays dispelled. Jim said they have a 6 hour half life. Fascinating. I was wheeled back to pre-op and to Staci who was wondering what had taken so long.

Flip Side: Part 1 (8-7-17)

One week ago, I was on the short count down to surgery. I had just spent an amazing weekend hiking, talking, laughing, loving and continuing to get to know this incredible man who challenges me in so many delightful ways. My VA deemed responsible adult, support person, friend Staci had flow in from Phoenix and was beginning her mother henning using her own breast cancer experience to ease mine. Monday…Tuesday…Wednesday…I finished things up at work preparing for the unknown of what surgery and recovery would be like. I spent some time talking with Benjah, one of the Beloved coordinators assessing how to fit me into helping at the festival which was happening just one week after surgery. We settled on a light schedule so that I could still participate. I am learning to allow people to hear what I would like to do and meet it with gentle caring and a modified schedule. It’s been hard to change my lens from “You can’t do this” to “You don’t have to do this and it’s okay.” I worked a half day surrounded by amazing people, got lots of hugs, ran with the kids just watching them in their brilliant resilience absorbing their positive energy and walked away with flowers and prayers and well wishes. I came home to finish packing up to head to Portland. When I arrived, I had a houseful. Mom, my two dads, Dean, Staci and at one point my cousin Carrie were all over. It was vibrant and everyone was having a wonderful time catching up with each other. I, on the other hand, wanted to go hide in the closet. I’m still having a difficult time wrapping my mind around the fact that this is a big deal. After lots of hugs and a double check I had what I needed to be comfortable for the next two nights, Staci and I headed north. We dropped Scarlet off with Melanie so she could be well cared for since she didn’t see the need to wait until I was done with my medical stuff to have her own–princess.

In Tigard, where we were staying we went over to Banning’s Pie House and had dinner. They have the most delicious salmon cakes. I wasn’t particularly hungry but I wasn’t going to be able to eat anything after midnight so I figured I’d better eat. We also ordered pies. Staci got two (strawberry rhubarb and chocolate layer cake) and I got two (chocolate cream and marionberry poppyseed cake). We wanted extra for after surgery. That was an excellent idea. It also made us both look like piggies. I tossed and turned most of the night unable to shut my brain off. I also drank a ton of water since I would also be cut off from that starting at midnight, so I spent a fair amount of time getting up and going to the restroom. When the alarm rang at 5am, I actually felt more calm then I had for the last few days. I bathed myself in the surgical scrub they gave me for the second time (It puts the lotion on its skin) pulled up my crabby socks and off we went to the VA.

Looming (7-28-17)

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…

Radioactive Unicorn (7-13-17)

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.

Reframing Interactions (7-6-17)

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.