“We must find time to stop and thank the people who make a difference in our lives.”
― John F. Kennedy
A big day for me and one of my bosses hit his big 50 today! I won't call him out, but in case you're reading this- sorry I didn't send you birthday greetings this day, so happy belated birthday! You are an awesome boss! Thank you for all your support!
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“Choices are funny things-ask a native tribe that's eaten grubs and roots forever if they're unhappy, and they'll shrug. But give them filet mignon and truffle sauce and then ask them to go back to living off the land, and they will always be thinking of that gourmet meal. If you don't know there's an alternative, you can't miss it.”
― Jodi Picoult, Handle With Care
Ugh! Let's just say today I got a sample taste of that gourmet meal (Mayo Clinic options). One would think this is awesome, but I'm left feeling overwhelmed, confused, and numb. I'm not sad- I cried very little today compared to last week, I think I'm just tired and seriously conflicted. Let me rewind to how it all started...
I was determined, or so I thought... I'm going to make sure I "wake up and pay attention!" (when you read that quote, you should be singing it like in the movie Sister Act) I woke up and I was early! My gas tank was empty (light had been glowing the night before, but I was super exhausted from working late, I did not bother to fill up), so after I got ready, I drove first to the gas station and filled up my tank. I made sure to fill it to a total that had the number 3 in it. Three for some reason has become my good luck number and I finally hit it after almost over-filling my tank. I was so happy I hit number 13, I knew today was off to a good start.
My schedule said I had to check in at 8:45am. I was there by 8:30am-- great start! I get in the "check-in" line and the lady hands me some forms to complete and says my appointment is at 9:45 am since I had handled most of the paperwork over the telephone a couple of weeks ago already. I was excited I was not late, so I asked where the cafeteria was so I could feed my greedy belly. She said she already checked me in, so because they know I'm there, they might call me anytime, so I shouldn't leave. She said I could go to the cafeteria and come back but let her know. I decided that was too complicated, and would just kill time completing the forms and checking in on facebook (of course- lol!).
This campus of the Mayo clinic is familiar as I had brought my mom here for her appointments a few years ago, so I was not surprised. It does NOT have that gross hospital feeling to it, but rather a hotel and airport type feeling. It is a very nice facility, except that the elevators smell like fruit bat (fanihi for all my chamorro peoples), skunk for my fellow mid-westerners, and skunk marijuana (for all my non-fellow pot heads-lol!). I did not realize every elevator smelled this way until I had to take them throughout the day. That said, I was completely horrified when I first went in the elevator to go to the 3rd floor where the breast clinic is located, and it stopped on the second floor where I was the only person in the elevator and another person entered. I couldn't help but think, "Damn! this man must think I stunk up this elevator." I wanted to say, "just FYI this elevator smelled this way before I got on." But I didn't. Although, I should have. lol!
The airport part is there are two lines, one for "check in" and the other I think was for "scheduling." You get in line and wait as if you're about to check-in at an airport, except now it has become a bank, because the people are sitting in bank teller like booths. They are all very friendly and quite fast to help you. After I checked in and killed time on facebook on my phone and completing the check in forms, I am finally called. I am led by a very nice lady name Jane ( I remember because my boss just had a beautiful baby she named Lola Jane), who seems more genuinely heart broken about my cancer than I am. She leads me to the back and takes my weight and height. Today I am 120 pounds. It turns out they also take weight by KG and convert to LBS-- (must be a medical thing). I have lost weight during this process, but not because I'm getting skinnier, but because I swear I must have lost muscle since I stopped my insane Insanity routine, ugh! I digress (blame the tequila- I might regret this post later- tequila and internet blogging doesn't sound very smart- whatever! It's MY journal!).
Jane leads me to an examination room that looks like an office too. I try to make light and joke about my cancer, and she kind of laughs with me and then makes sure she says she's not making light of my situation. I know this and remind her it's OK. She really was sad for me. I felt bad for her. She leaves and another lady came in, a nurse. She's younger, eight months pregnant and beautiful. I like her and she laughs at all my jokes, genuinely! lol! I find out she's expecting her first child, a son, on October 29, which makes me think of my boss's wife due on the 31st and my friend from 7th grade due on the 30th-- plenty babies this year. She's super sweet and helpful. She holds this white binder and shows me with excitement telling me that it is mine to keep! I'm thinking that my probably genuine leather giveaway from CTCA is way more impressive than this, but didn't want to break her excitement so I pretend it's exciting for me too- lol! The binder also has slots with business cards inserted- just like CTCA! I'm so bad- lol! I take the binder and continue chatting with this lovely young nurse. She explains to me that I will be meeting Dr. Gray who is the surgical oncologist. She says how great his is. I ask her if he's the one who will be cutting me if I select Mayo, and she confirms. I said good because I want to meet who potentially will be the one cutting me. She then tells me that he has a resident assistant with him, and asks whether that's OK with me. I laugh and say of course, just my luck, like CTCA, they also had a "shadow" doctor in training. I told her so there would be three people watching as they examine my boobs, the two male doctors and a female nurse. To my surprise, she says that they don't have to have a female nurse in the room, unless the patient wants it, and that they usually ask the patient's preference. I tell her I don't care either way, and it's fine if there's no female in the room, and I'm OK with the resident assistant coming in with my surgeon. She hands me the hospital gown and instructs me yo undress from the waist up and open side on the front (same routine and I laugh again as I remember my first CTCA visit with leaving the back open- I share this humiliating story with the nurse and we laugh together).
She leaves and I get changed and wait for the doctors to come in. To my surprise just the resident surgeon comes in alone. He's not wearing the typical white lab coat. Nope. He is instead dressed in a suit (like a corporate business man or attorney). He is tall, young looking and slender. He reminds me of a character from a sitcom-- like the guy from the Big Bang Theory on CBS, Sheldon. He's very scientific and has some of that demeanor that Sheldon character has. An eccentric character, but one that I liked. He asks me all the same questions I have been asked over and over through this process, and then he says he will examine me. I must admit that even though I had that discussion with the nurse earlier, I was surprised that he was going to examine me with nobody else in the room. I had expected at least the main surgeon would be in the room too. He had me lay down and then begins to feel and examine both my breasts. He uses his fingers and begins walking them around each boob. He's very thorough and notes the lumpiness. It's done and I get back up. Now, I don't recall whether he leaves and then comes back with the main surgeon or whether the main surgeon just comes in after. Looking back, I'm pretty sure he leaves to get the surgeon and then they both come back in together.
The main surgeon (the one who would be cutting me), Dr. Gray, is also dressed in a corporate suit. I notice he has a light pink neck tie and I like that (since having breast cancer, I've become a big fan of pink). He is also tall and slender, but not as slender as the resident surgeon. He looks older than the resident, but still not old- he looks like he could still be in his 40's. They both have wedding bands, and for some strange reason this comforts me- weird but true. They had asked earlier about my profession, and he tells me he is partial to lawyers, because his wife is an attorney. We discuss my case and diagnosis, and he brings up facts and options that I had not heard about from CTCA. He said if he did the lumpectomy, he would not do the sentinel node biopsy unless after the lumpectomy if it shows some invasive cancer, then he would do the biopsy on the lymph node. I asked why, and he said the biopsy on the lymph node risks causing lymphodema which is a life long condition- uncurable. He would not risk that unless necessary. It is pain and swelling of the arm for life. If, however, I opted for a mastectomy, he would have to do the sentinel node biopsy, because you cannot do it after a mastectomy (can't go backwards). It apparently involves putting radioactive ink in something that leads to whatever node they need to biopsy, and if the breast is removed, they cannot do this. So with a mastectomy, I risk lymphodema in that arm- with a double mastectomy, I risk it in both arms. A condition for life. FML. He also said that their radiologist wanted to order another mammogram on my right breast, because they noticed something that is not so clear in my original mammogram films. We discussed waiting for my genetic testing results and also the ordered MRI by CTCA. He said he agreed with the timing of the MRI and CTCA's recommendation there as he also would have ordered one out of concern for my right breast too. The end of it all, he asked whether I wanted to get everything done in one day or as much as I could today and then anything we couldn't do today on another day. I told him I took the whole day off, and so I wanted to get as much done as I could today. He said he would go check the other doctors and see what I could get done today. I walk out and wait in another area where they make a new schedule for me. He was able to get everything in for today. Thank God!
The next thing on my schedule is in an hour and a half at 12:30pm. It's with the plastic surgeon in case I decide to get a mastectomy, this doctor would do the reconstructive surgery with an implant or other piece of my body type surgery. I realize my schedule is full for the day, so I had better grab something from the cafeteria and feed my belly. I take the skunk smelling elevator to the cafeteria level. I am disappointed, because CTCA had spoiled me with their lovely dining room set-up and especially their ridiculously cheap cancer patient discount! Mayo was nothing special, and not cheap. I paid over $7 for my meal, and the set-up was crowded with lots of sick people.
OMG! When I heard a cough, I wanted to stop breathing! All I kept thinking about is the people here are sick with potentially EVERYTHING, not just cancer! OMG! That person might have tuberculosis, I better not breathe! lol! I get this germaphobia from my father. At CTCA, you know nobody is contagious-- the beauty of cancer :) ha!ha! God only knows what's roaming the halls and cafeteria of Mayo- just sayin... *sigh* I finally get through lunch and head to meet with the plastic surgeon.
To my pleasant surprise, YES! FINALLY, a female doctor! And I love her too! She is AMAZING! She would be the plastic surgeon that would do my breast reconstruction if I got a mastectomy. She shows me the silicone and the saline implants. We discussed in detail these option, risks etc. She then informs me that getting a double mastectomy is also an option for me to keep my breast balanced and as similar as possible and not have to worry in the future about my right breast if I only had a mastectomy on the left. It was peace of mind she was offering. I had no idea that federal law required insurance to cover reconstructive surgery for both breasts even with my diagnosis. Also, if my diagnosis proved to remain noninvasive and far from the nipple, the mastectomy could be done sparing my nipple. Normal mastectomy removes all the breast, skin and nipple included! That's a much more difficult thing for me to handle thinking about. Now, they might be able to save my nipple and just remove my breast-- although I would still not have any feeling of my breast, it seems oddly comforting knowing I would be able to skip nipple tattooing and reconstruction after the surgery. The more we talked about everything, I kept asking the doctor, "why wouldn't I have a mastectomy?" I still cannot understand why I would opt for a lumpectomy after everything we discussed and all that I learned. I forgot to mention that in the consult earlier with the surgical oncologist Dr. Gray, he said if I did the mastectomy, I would NOT need radiation. Now if I did a double mastectomy, not only would I not bother with radiation, I would not bother with 5 years of tamoxifen! How wonderful is that! Downside is it's a major surgery and will require more healing time and an overnight hospital stay. But without having the have 6 weeks of radiation after, it seems like the lumpectomy is still more intrusive. The plastic surgeon, Dr, Bash, was absolutely AMAZING! When we ended, she gave me a hug and was so comforting and understanding and thorough, I knew I trusted her. Additionally, she and Dr. Gray have worked together before doing the same procedure. If I opted for this, Dr. Gray would remove my breast and she would start reconstruction immediately as he began removing the next breast. They know each other, work together and have done this before. I trust them both.
This appointment took longer than was scheduled for as I had another appointment with radiation in the next hour. They were setting up that I go get photographs of my breast taken in case I decide to get the procedure done, but I pointed out I was already over ten minutes late for my radiation appointment. They send me off to my radiation appointment and give me a slip to get the photo's taken after my other appointments. I rush out and walk over to the other end where there is a separate check-in for radiation.
At the radiation/oncology consult, I am first seen my a nurse who is very nice and helpful and then she mentions my father being dead so young. I told her my father is alive and very healthy, that was my uncle, his brother that had died from lung cancer. Apparently, now Mayo thinks it's my father that is dead and not my father's brother (my uncle)-- sorry dad!! lol! Thankfully, this is an error on whoever input the information from my medical records re family cancer history. They still have it in their record but I had her correct it. The radiation oncologist is also an Asian man (like CTCA- now I forever have the stereotype that radiation oncologists must be Asian- lol!), Mr. Wong. His nurse gave me the heads up that he will be overly informative and tell me all the risks, but that she has rarely ever seen any of the risks actually occur. Mr. Wong enters and we discuss in detail all about radiation treatment after surgery. Apparently, some of the risks include very minimal risk of cancer caused by radiation (ironic). Then sometimes the radiation can affect the lungs and I would get a cough that would be treated with prednisone. Also, since it's my left breast, my heart is right there, there's a risk of future heart problems, but that's why they don't shoot the radiation straight from the front back, but more slanted from the side to try to avoid exposure to the heart and lungs. Also, ribs might be more sensitive and prone to fracturing. And then after radiation, I have to be on tomaxifen for 5 years, prohibiting me from having children until after 5 years, and also would still not guarantee no reoccurence, but only reduce the percentage chance of reoccurence. If I opted for the lumpectomy and radiation for six weeks after surgery has healed, I have to go drive for radiation treatments 5 days a week for 6 weeks, and these are only the possible side effects and not the other unknown side effects of how radiation would affect-- if I would be more lethargic or tired etc. It just felt so extremely dragged out and never ending. Don't get me wrong, I am glad I don't have to have chemo as I can only imagine all the effects of that, but radiation is not a joke either. People stay away from radiation for a reason. Dr. Gray said the radiation oncologist explained it this way, "low doses of radiation cause cancer, but high doses kill cancer." Let's think about this. I'm ordered another mammogram today which would make my exposure twice in less than 2 months, and then for the rest of my life every year I would need little doses of radiation exposure for mammograms on my breasts since I am now high risk. WTH?!?! It's a never fucken ending story/cycle I am foreseeing here. I am no longer comfortable with radiation therapy. Dr. Wong was also very amazing. He was very scientific and informative, which I found very helpful. As soon as this is done, I run to my next appointment, which is another mammogram on my right breast. Yippie! radiation exposure. :(
I get to the lower level where the mammograms are done. No cell phone service. I check in and wait to be called. They call me and a lady walks me to a dressing room and hands me a half gown type top that has arms (no christmas tree skirt here). This time she instructs me to change into this from waist up and leave all my belongings in the dressing room. When I'm done, there's a key to the door that I take and wrap the band on my wrist after locking my room. I go into a second waiting room where another older lady is waiting in the same hospital gown top. They have free coffee, orange juice, water and apple juice and crackers as we wait. They have a TV on and I think HGTV is on and magazines. I take a seat and grab a magazine and watch TV. I try to make conversation with the other lady in the room, but she's not interested. Poor me- lol! I crack the silence by jokingly telling her- "Hey, we have the same top on!" She was polite back to me, but that was it- back to the silence we go. A few other women come and sit and still everyone is so unfriendly. I'm still the youngest looking one in the gown, as usual.
Finally, a woman who is lanky and tall and gray haired, looks like she has to be in her 70's or even 80's comes out slightly hunched back and calls my name. She makes me think she could be a character from a cartoon-- the old emotionless bored disinterested villain's assistant. She's as exciting and enthused as her appearance. She wasn't the short haired blond I had at my first mammogram, but she does bear hug me from behind too. She leads me to the mammogram room, which is freezing. There's a computer and the mammogram machine. She hands me this heavy padded like x-ray type thing to tie around my waist (velcrow belted). I think it strange that the other mammogram place didn't make me wear this and wonder now whether my lower body was not protected at the other mammogram place (crap! low dose radiation causes cancer, remember). Anyway, she tries to take an image of my right boob after placing me in the machine. She's frustrated and gives me this face as she cannot get an image. She re-positions me and tells me to keep my head up, and not look down at what she's trying to do with my boob, because my body position changes. As she leaves me trapped in this machine, she goes to the computer and each time says "Don't breathe." I already was naturally holding my breath as she told me not to move, so I was probably turning blue by then. She's not happy about the images, and resets the machine with other parts and takes more images. She then instructs me she will show them to the doctor, so I should go back to the waiting room, but do not leave yet. She kept telling me I cannot leave yet. I told her ok and went back to the waiting room where other older women continue to ignore each other as we wait in the same half gowns. I decide I want to get coffee while I'm waiting-- it's past 3:30pm at this point- coffee is cold and disgusting-- I threw it away and ate graham crackers. I was tired.
Finally, another person calls me and she leads me to a room where the radiologist comes to meet me. We introduce each other, and he begins to tell me that he is not comfortable saying my right breast does not have cancer or that it does. He said if i was an older woman with the same mammogram, he probably would not be concerned about the calcifications in my right breast, but because I'm young (tend to me more aggresive cancers), and I have DCIS in my left breast, he cannot say it is not cancer in my right breast, and therefore would like to order a biopsy on my right breast. FML. REALLY? ugh! I'm sooo over my boobs by this point. He said he spoke to Dr. Gray and that Dr. Gray said I can go back to him right now to discuss this with him. I thanked him and told him I would go speak to Dr. Gray. I also said depending on my genetic testing, this may all be moot if my gene test comes back positive, because I would automatically get a double mastectomy anyway, so don't waste time and testing and money with another biopsy. Now, if my genetic testing comes back negative, I have a lot of shit to think about....
I go back upstairs and meet with Dr. Gray again, and he tells me the same thing. He said the radiologist is just not comfortable giving the the all's clear on my right boob, and so they want a biopsy on that boob. He said he also spoke to Dr. Bash (plastic surgeon), and he knows I may be interested in a double mastectomy, which would make the biopsy unnecessary and that we also are still waiting for the genetic testing. I also still have the MRI scheduled at CTCA on the 3rd that would be cancelled if I got the double mastectomy, because the MRI was ordered for concern over my right boob too and other lumps in my left. All I kept thinking in my head is this is what I will have to keep dealing with and will be a constant in my future as long as I have my boobs, I will have to have radiation, 5 years of some medication that only lowers my risk (no guarantee), low dose radiation exposure for annual mammograms, and never having any certainty-- risking going through this process from square one all over again. I cannot see a reason why I would want to save and keep my breasts-- I will be physically deformed either way and mentally uncertain forever if I keep my breast and for what? I just want them to take both out. I want to be done with it. I feel almost guilty if I don't experience radiation and multiple surgeries and mammograms, like I don't deserve to say I have breast cancer- like it's the cheater way out-- like I will be judged-- BUT guess what? It's MY LIFE. This is my cancer, and I don't want to keep it or let it control so much more of my life-- more than it already has. Cut the shit out! I don't understand why I would have a lumpectomy. I feel like I'm missing something. It seems too easy. Take out my boobs and build me fake ones. No radiation, no future concerns about breast cancer, no Tamoxifen, so I can get pregnant if I wanted in the next 5 years. Easy enough. But it's really not. It's not like I'm just getting regular breast implants, my boobs are being removed-- it will just be the implant so it will be different. It will never be my boob and I will never feel them, breast feed, or be without scars. It sucks. But it sucks less, and I am entitled to chose an option that sucks less. Nobody is living my life but me, and I don't want to waste anymore of it over breast cancer. I risk lymphodema, but I risk it anyway in the future if it did spread. Federal law protects me having insurance cover the reconstruction of both breasts even though the other has not been diagnosed with cancer (lucky me, the doctors are saying I might have cancer in both any damn way- but why bother wasting time, money and resources to confirm when I can just have it removed). I'm still trying to understand why I would NOT have a double mastectomy. I keep feeling like I'm missing something. So I want to use my weekend to think about all this and weigh my options. I'm EXHAUSTED. But I still have to get my boobs photographed in case I choose mastectomy and get reconstruction. Finally, like five minutes to 5pm, the photographer finally sees me. I take off my top and stand in what seems to be a photo studio with professional lights and everything. They had told me earlier that a female photographer was not available and it would be a man, but I could reschedule if I was not comfortable. I was like, I want everything done with today. So here I was with a man in this freezing room topless as he takes my pictures. I was told my head would be cropped off. I thought he would take pictures without my head, but he was taking complete pictures that he said would later be cropped. FML. I now have topless pictures of me in my Mayo file-- WTF?! By this time, I just want it all done. I don't give a shit anymore. I'm freezing, hungry and EXHAUSTED and just want to go home.
It is finally over. Everybody has closed and headed home. When I arrived this morning, the parking lots were full; when I left, it was almost empty. It has been a LONG LONG day. I'm tired and confused. I decide to think about it all this weekend and make a choice Monday.
“We don't get to
chose what is true. We only get to choose what we do about it.”
― Kami Garcia
It's going to be a long week...
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