September 18, 2012- Tuesday
Today was a good day. After quickly perusing through cancer books I had loaned from the Scottsdale Public Library last night, I reassured myself that the worst and all possibilities were already made known to me the day before. No more surprises. I can do this. Knowledge is power. I’m keeping the power in my hands from here forward.
The day started with me rushing to the office real quick to get some notes for my boss about a deposition transcript taking program that I was going to miss this day. (My job has been AMAZING through this ordeal, and I am so BLESSED for this and THANKFUL). The night before, my boss had sent out an email that the office would have “Friday casual” the rest of the week. Yay! This meant I did not have to dress like a serious professional adult for my appointment this morning-- jeans were in! (Yesterday, Nathan (the first scheduler) mentioned he missed my kool aid shirt and why was I dressed up that day-- I think the work clothes were depressing-lol! So this is good news for me-- I can dress happy!). I thought about wearing either my green or purple kool-aid smiley face t-shirt to my appointment, but then I saw my bright pink “I may be cute, but I got mad ninja skills” t-shirt (thanks again, walmart;)). I knew instantly - that was the shirt!
Pink for breast cancer, cute for me (lol!), and ninja ready to battle all that potentially may be coming my way-- perfect, I tell ya! The problem was that my tattoo on my right arm still showed as the sleeves weren’t long enough, and I could never go to the office with my tattoo showing (ok, Mom, you were right, but only for this aspect of my tattoos). So, I packed my favorite charcoal gray office giveaway t-shirt that had sleeves long enough to cover my tattoo completely, and I would just change before I returned to the office that afternoon.
That morning, however, right before 8:30am I ran in quick to the office to leave my boss the notes. I was caught with my pink t-shirt on, but nobody said anything-- I scooted outta there before anyone else or a client saw me. Well, my biggest boss caught me in my office, but he was most concerned about me (probably after yesterday’s journal, I don’t think he noticed my tattoo was partially exposed, and if he did, he was kind enough not to say anything about it- Thanks, Ron- ha!ha!). I was able to make it only a couple minutes late to my 9am appointment in Goodyear. I was ready-- all three bags and my ninja pink t-shirt on. I parked and checked myself in at the clinic. Immediately, this woman hears my name and sees me and says, “Lynn, I’m here to see you.” She’s a CTCA employee, so I thought she must be one of the nurses to take me to the examination room, but nope. She’s in the marketing and I guess you would call it “customer service” department. There’s a small bench right in front by the waiting room, and she puts her hand out as to invite me to sit and she would sit next to me. Crap! I have three large bags- we could barely fit, but we managed- lol! She hands me an envelope which contains a questionnaire/survey and asks me to complete it after my appointment and drop it in the survey box up front when I’m done. I take it and agree to do it. She confides in me that she is also a patient at the clinic and has a treatment that same day. I could feel her compassion and her sensing all that I must have been feeling-- someone who knew what I was going through-- she had been in my position; she’s proof of life going on… made my eyes water. She hugged me saying everything would be ok. I was curious to know what kind of cancer she was being treated for, but I didn’t ask. I figure she didn’t share so I left it at my curiosity.
Then, the nurse takes me back to the examination room. Basic “nurse assessment” again (temperature, blood pressure, pulse, oxygen level) and again I’m healthy as can be (aside from the cancer, of course- ha!ha!- that always makes me laugh). She looks for a hospital gown for me to change into before she gets the oncologist to come examine me and let me know the plan. She leaves me and I undress from the waist up and put the gown on (FRONT open this time again- ha!ha!). I sit on the exam table as my large three bags take the entire couch, and I’m suppose to sit on the exam table. I wonder why he would need to examine me again. They know I have cancer, and my boobs have now officially been examined three times by three different men during three visits here (not counting the exams that got me there in the first place that showed my cancer). “Don’t these people communicate?” I thought to myself. I understood yesterday, the surgical oncologist feeling me and saying time locations out loud as his assistant noted all my lumps etc. He needs to feel it all; he’s the one who would be cutting me. My understanding of the oncologist was that he was described as the “steerer of the ship”- he would order my chemo (if needed, actually be the one to determine if it’s needed, and radiation therapy and overall treatment plan). Don’t misunderstand me, I have never felt violated or ashamed being examined, I’ve had my boobs felt so much, I could probably have a stranger feel them to show the lumps and not feel anything other than scientific about it. My boobs have lost all sexual nature to them- they have been felt so much and maybe my brain is just thinking this way too since they are responsible for this cancer which, if not treated, could potentially kill me (just sayin… lol!). It has become completely scientific now for me. That said, don’t any of you be thinking you can ask to feel my boob or try to feel them-- I won’t let you. Just making sure that’s clear- ha!ha!
Finally, the oncologist, Dr. Niu enters together with (female, of course, remember standard protocol when have exams by male doctor) my Care Manager, Maggie. She sits on a chair directly facing the exam table. Dr. Niu sits to the side of the table. After introductions and some chatting, he informs me he will examine me. He feels my breasts as I’m sitting up, which is different from the other exams that had me lying down. I’m anxious and nervous, and for those of you who know me, I have a huge palm and feet sweating problem-- add cancer nerves to the list, and armpit might have won the battle against antiperspirant today- OMG! Worse yet, is this oncologist keeps trying to feel my lymph nodes-- where, might you ask are these lymph nodes? My ARMPIT! Fa!fa! (for all my Chamorro readers- ha!ha!). I’m feeling a little humiliated as I’m hoping to God I don’t sweat on this man’s hands- OMG! Ugh! Lol! Finally, it’s over. He informs me I don’t have to sit on the exam table anymore and suggests I can sit on the couch that has all three of my large bags on it with barely any space for a pen to be placed on it, much less an entire human! I point out the obvious and say I am ok sitting on the exam table for the rest of the appointment- lol!
He said my lymph nodes felt a little large, but not large enough like how cancer would feel, but still larger than normal. He described it as if I possibly might have an autoimmune disorder type symptom like lupus or an infection possibly (I’m thinking- WTF?! Lupus? How the hell did that word come up?!? *confusion*) But I don’t over think it or read more into it and just console myself telling myself he’s just describing the symptom that comes to his mind). We discuss what Dr. Wascher had went over with me the day before. I told him, Dr. Wascher was great, but he scared me with a lot of information. He said he and Dr. Wascher are good friends, and he thought Dr. Wascher always gave too much information; whereas, he did not think all of that extra fear causing information was necessary. I told him, I was fearful, but I also appreciated all the information, because I wanted to know all the possibilities and all my options so I could make an educated decision. I also appreciated very much understanding why certain tests were being ordered and all the percentages of risk. I then asked him if that meant he would be hiding information from me, and he said no he wouldn‘t, but he wouldn‘t focus on anything he thought was unnecessary or not confirmed as being part of my diagnosis.
Dr. Niu was much more relaxed and casual than Dr. Wascher was. I read a little about his background because he was in my magazine of “Arizona’s Top Doctors,” which I had with me in one of my three hoarding bags on the couch. I told him I had the magazine about him, and he said “that’s all marketing.” ha!ha! At least he’s honest- lol! He’s Chinese and still had a heavy accent-- having been born and raised on a highly asian influenced and diverse island, I had no problems understanding him. I even understood his cultural perspective when he caught himself possibly stepping into inappropriate assumptions. This happened when he assumed if I wanted kids in the future I would be married first- lol! He caught himself, and corrected himself apologizing “he forgot where he was.” lol! Yay! Women’s rights! Lol! He was very much concerned about me being not only a young woman, but a single/childless woman (sounds so depressing). He knew that changed things for me, and admitted it would affect his recommendations for my treatment plan. I’m again left feeling a little confused by this perspective. I appreciate it and I don’t at the same time. I appreciate it, because he is correct, this is my reality and at the end of the day whatever treatment route I take, I will have to live with the effects on my personal life that my decision will have (dating with boobs is hard enough as it is, I can’t even fathom dating without boobs or seriously deformed/scarred ones, or trying to explain all this to anyone I meet romantically without scaring him away*sigh*). He’s thinking ahead and not only about my health but about the quality of my life. He tells me with confidence he knows I will be cured, and follows that with he does not say that to all his patients. My cancer is early, and he is confident, they can get it out. This comforts me. The part of me that was confused about his perspective is I felt like I didn’t have time to think about the future. I’m here now. Cancer is here now. All I want is the cancer to be gone- disfigurement and children is my last priority or it should be his- at least in my mind. Shouldn’t he just be concerned about getting the cancer out so I stay alive? Truth is, I’m probably more comforted about his concern for my status and where I am at in my life now. Truth is, THOSE ISSUES, not so much the cancer cause me to stress and cry. Then after, I feel guilty and superficial and dumb for worrying about such things that seem so superficial. So to hear an educated doctor outside of my world validate that what has been making me most crazy is ok to take into consideration makes me feel like less of a dumbass… I feel so blessed in my life, and I have been single and living on my own for so many years already, pre-cancer I felt I was prepared to accept the possibility that I would always be single and possibly never being blessed with children. The odds were there. Post cancer diagnosis and even IF I don’t have the “cancer gene” the reality of ever having a husband or boyfriend and children slips further from my reality and the odds are worse and against that ever happening… It makes me sad, and I mourn for that reality becoming a little more definite. SUCKS! We discussed briefly the possible treatment paths. We did not spend as much time on the “cancer gene” possibility as he believed there was a low chance I carry the gene (this was relieving to me). That said, the little we did discuss, he told me he still would not recommend removal of my ovaries until maybe when I was closer to age 40. I told him if I had the gene, I don’t want anymore cancers, so I would have my ovaries and breasts removed. He said his recommendations would be otherwise, but at the end of the day, I was the patient and it would be my decision completely, and I could follow the doctor’s advice or not, it would be up to me ultimately. We cut that discussion short, and I’m glad we did. I don’t want that to be my reality. Every question that I asked, he would follow with “that’s a very smart good question.” I don’t know if he genuinely felt that way or whether he was just trying to make me feel good- lol! I told him I need my notepad before he went into the three possible treatment plans. I got my pen and notepad and he began discussing the following three possibilities:
1. DCIS- after surgery and lymph node biopsy shows true DCIS (noninvasive cancer still, nothing in the lymph nodes): lumpectomy, radiation, and hormonal therapy for five years.
2. Invasive cancer but negative/not in the lymph nodes: if the tumor is less than 0.5 centimeters, same treatment as #1 above and no chemo; but, if tumor is over 0.5 cemtimenters, then they will do a study called “Oncotype DX” which is a prognostic tool to predict whether I will benefit from chemo and if so, it would recommend the type of chemo
3. Invasive and Positive in my lymph nodes as well-- everything with chemo
He said he believes after reviewing my records, the chances of me needing the above three therapies are #1 80-90%, which I had been expecting anyway, so that was comforting; he said #2 maybe a 5-10% chance, and he thought the possibility of #3 is less than 1% chance that would be my case.
Now, this is all assuming I don’t have the “cancer gene.” That changes everything. If I have the cancer gene, I would most likely have bilateral (double/both breasts removed) mastectomy. And a lot of contemplating about my ovaries and whether I want to seek alternative egg preserving and other fertility issues. I won’t go into that anymore, because I don’t believe in my heart that is my case…
Here’s one of the smart questions I asked, all the treatments call for me being on hormone therapy for five years after (take a pill everyday for 5 years called Tamoxifen). This would be to help prevent reoccurrence as I am a high risk for reoccurrence in the same breast or the other breast. Since my cancer is an estrogen type of fed cancer, the Tamoxifen would keep my estrogen out of my breast and help reduce my reoccurrence risk. I may still have my ovaries, but I cannot get pregnant while I am on Tamoxifen, otherwise risk birth defects etc. FML. In five years, I will be close to forty years old. Without the hormone therapy or cancer, to have first pregnancy and child at 40 is risky enough, now if I follow this program, I close out any possibility of having children until then, and even then the odds suck! Anyway, on the brighter side, I have not met anyone close to making me want to have a child with him or making boyfriend status, so forget step 1, I have not even crossed step 0.5! Even without the cancer, I probably won’t get married or have biological children, so potentially no real loss, right? Just lie to me and agree- lol! I’m getting better at accepting this hard reality… It is my biggest struggle personally trying to accept all these odds against me ever becoming a mother, but it is what it is… Thank God for nieces and nephews and friends babies J *sigh*
I told Dr. Niu I am still deciding where to receive treatment, and it is between CTCA and Mayo. He asks who I have seen at Mayo, because he knows some doctors there. I told him I have not been yet, and CTCA is the first place I’ve been to. He was at first taken aback I think, but later told me I need to make sure I am comfortable with where I received treatment. He said I must trust my surgeon and so if I don’t trust Dr. Wascher, I shouldn’t use him. That was good to hear. I thought to myself what a difficult decision this will be because I did really like Dr. Wascher. I trust him already. We shall see how Mayo goes next week. Out of everyone I’m meeting, the surgeon is my most important concern and most important person I want to meet.
I am done with the oncologist. Next on the agenda is the Naturopathic physician. He comes in and introduces himself. His voice is a little high pitched. I don’t know why, but he seems nervous or awkward (he didn‘t do anything wrong, but just the vibe I got from him- nothing bad about him). He explains what a naturopathic physician does and how he also has to get licensed and is a doctor. He tells me his role with how he will help supplement regular treatment with other non prescription medicines. He asks whether I’ve been able to sleep. I confess I have not been able to sleep well these past few weeks but I thought that was due mostly to not having time to get everything done, and the new stress. He asked about anxiety and I told him generally I am ok, but I have my moments. He prescribed me 20mg of melatonin (over the counter standard is 3mg) as a sleep and immune system aid. He said my dosage was larger because I have cancer and it will help with my immune system. I said I would try the anti-anxiety supplement too and he prescribed some amino acid called gava (? I might be wrong, I don’t have it with me now to check) but it's suppose to support some inhibitor when it comes to anxiety. I have not tried any yet. Lol! Him and his nerves left and then I met the nutrition person.
The nutrition person asked about my diet and she also seemed nice but a bit strange. She reminded me on Popeye’s girlfriend Olive Oyl. A pretty lady, but she had that look and feel, a bit oblivious or I don’t know… Like she was trying too hard to connect with me or I don’t know. Like when I thought the conversation might be over, she would just sit there and look at me- lol! How I did not laugh, I do not know. I don’t want to say anything bad about her, because she seemed like a really nice person; I just didn’t get it. Maybe the fact that when she first came in, the first thing she said was “I saw you don’t have any food allergies.” lolol! If you know me, you are laughing with me, because you all know my food allergy list can go on for days. I told them that and it’s in their records-- I said no, I actually have a ton. She opened her laptop and went and read my records and confirmed my insane amount of food allergies- lol! Everytime I asked something, she would start with “According to the National Cancer Association of America…” and I wanted to laugh every time! Ha!ha! But I was good and I didn’t, because she was a really nice person, just strange and awkward dialogue or non-dialogue between us. It also could be that I was moody exhausted by then. The sad news is I love my red meat, and it is recommended by the national cancer blah blah that I eat less than 18 oz. of red meat per week. *sigh* the funny thing she did say is that pork is considered to be in the category of red meat and it is false and only marketing scheme to think otherwise, she said, “pork is NOT the other white meat.” lolol! Also, people, check your labels, don’t eat anything with nitrates. The cafeteria at CTCA serves only organic, free range healthy food and nitrate free bacon (I’m surprised they have bacon- lol!). Finally, we are done.
I pack up to leave. I walk outside the clinic to the waiting area and make myself comfortable on the couches there (it’s a really nice place). I received a call from the Mayo clinic asking about the medications I’m currently taking in preparation for my appointment next week. Felt a little traitorous taking a call from Mayo while I’m at CTCA- lol! I was mentioning the new supplements I just got, and she said since I haven’t started taking them yet, she doesn’t need to know until my appointment next week. I asked if they received my pathology slides yet, and she transferred me and I was told they did not receive them yet. That was it, but now I’m nervous that they won’t have all my information in time, but we shall see…
I noticed just today, there’s a piano in the lobby area, because it’s playing music, on it’s own- no piano player- lol! It was nice. Fancy smancy for sure. My next appointment is at St. Joseph’s Hospital back in Phoenix. I have about an hour to spare so I decide to eat in the CTCA cafeteria. Being a patient, I get to eat cheap there. I got the grilled snapper and vegetables for only $2!!!! Amazing!
I left and went to find St. Joseph’s hospital.
I get to St. Joseph’s finally, and the parking garage is a paying one (I made it a point to make sure I asked about validating-- the cheap self that I am). I find my way from the garage to the hospital and go to the 6th floor to meet my genetic counselor. I am reminded how NICE CTCA is and how I hate the regular hospital feel. Saint Joseph’s is a great hospital, but it has that hospital feeling. I finally find the office. I fill out a form and then meet with one of the most amazing wonderful women I have ever met. She is Cathy McCann, and she is awesome! We spoke a lot about other personal life things and I learned a lot from her. She was super interested to learn about where I was from and what a Chamorro is. She wikipedia’d it while I was there, and it was fun. We went through my family history (not much) no real other cancers-- I’m apparently the star. I said there has to be a number one sometime- lol! On one of our side conversations, she said she had lived in Alaska for a while. I joked and said I heard that’s probably where I should go if I wanted to find a husband as the odds are something crazy like 11 men for every 1 woman. She responded, “yes, the odds are good, but the goods are odd.” OMG! I laughed so hard- that was FUNNY! Ha!ha! I called my aunt in San Diego (my lifeline) to get more medical history from her and confirm the little I did know. The genetic counselor wanted me to do the mouthwash oral test, but I was more comfortable with a blood test, so a nurse came and took me to another room. She took only one tube of my blood and that was that. Well, before that, I got a whole bunch of information and signed some forms about the test. It was a very pleasant visit and I felt good about it all. I got my garage ticket validated, walked to my car and quickly changed my t-shirt to my work t-shirt and returned to work.
After work, I had the extra treat of meeting with my 8 month pregnant long time friend from 7th grade for dinner at Pita Jungle. We finally were able to catch up, and it was good. It was a good day :)
