“I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.” – Mother Theresa
Hello Everyone,
Well, today was much more difficult than I had anticipated it to be… Quite frankly, I’m not sure I really knew what to expect, except that I was anxious to get some answers and less talking and closer to more doing. In that sense, it was a productive day, but still caused me to be more emotional than I thought I would be…
So I left the office at around exactly 12:30pm today. I had my first appointment with the nurse at 1:15pm, and I made it to CTCA in Goodyear by 1:10pm, so I had a few minutes to spare. Traffic wasn’t too bad, and I was hungry. I haven’t been good with my meals lately, but I had a protein bar with me and ate that on the way. When I reached CTCA, I was driving around looking for parking. All the close to the entrance spaces looked reserved, but upon further inspection, I noticed the spots said “Reserved for Patients.” Yay! Another Cancer perk! Score! Ha!ha! I realized I am a patient, and so I happily parked in a spot that was partially shaded by a tree. I put up my shade on my windshield, and carried what has become my three “cancer bags” that consist of my jumbo purse, CTCA probably leather giveaway, and a free bright orange Lancome bag I had got from Macy’s a while ago that holds all my films, and other documentation. I have become a bag and record keeper hoarder; I need to fix this asap! Lol!
I walk straight to the clinic section and let them know I arrived. A nurse brings me in to an exam room that again has a little whiteboard outside with my initials and the doctors/nurses I will meet today. The nurse takes all my vitals and weight, and thankfully I am not asked to pee in a cup again- yay! Ha!ha! She hands me a hospital gown and instructs me to undress from the waist up and sit on the exam table and someone will be in shortly. She asks whether I want water, and I say yes! I have been real dehydrated lately. Before she leaves, I ask if the gown should be opened in the front or rear- she responds the front. I then laugh and tell her how embarrassed I am, because the other doctors and nurses Friday were kind enough not to tell me “Hey stupid! You’re here for boob cancer, not back cancer, the front should be open” because I put it on with the back open Friday. I felt like an idiot and laughed it off. OMG! Ha!ha! I actually thought about it Friday and decided to have it back open because in all the movies people walked around trying to keep their butts covered in those gowns, so I figured that’s how I was suppose to wear it, not using any common sense that my breasts are in the front- lol! Anyway, I digress. I change into the gown and wait as she goes and gets me a water bottle, that by the way is made special for the CTCA- fancy smancy! I’ve attached a photo of this so you can enjoy as well J Ha! Ha!
She leaves me and my water and cell phone alone. It feels like forever sitting on that exam table waiting for someone else to knock and come in. As I’m sitting there, I notice the smell of the hospital gown. It made me feel like I was staying at a fancy hotel. It was the smell of chlorinated sheets! I don’t know why that makes me think fancy hotel- but it did- ha!ha! Just thought I’d share J Hopefully, it won’t work in reverse and have nice hotels remind me of hospital gowns— that doesn’t seem as pleasant J
Another nurse comes in and she is super sweet and friendly— I barely remember what we talked about, except that I began to tear up and then she said “Don’t cry, I don’t like leaving people alone when they cry.” She was telling me about the surgeon I was about to meet and about how he would be very statistical and informative and how if I wanted to, I could take notes, and then she began talking about chemo and radiation and all kinds of stuff that are a blur right now. I remember insisting I am pretty certain I won’t need chemo. All I remember is I felt like a kid in kindergarten and she was my school teacher and it was the first day and I was scared for some reason. The longer she stayed and looked at me with sad eyes, the more I wanted to cry- ha!ha! I can laugh about it now, but she’s just one of those people that has that special effect- ha!ha!
Finally, Dr. Robert Wascher who is the surgeon, I take that back, not just any general surgeon, but a surgical oncologist who will be performing my surgery if I chose CTCA walks in with a physician assistant whose name I didn’t catch. The physician assistant looks like a middle aged lady and she takes a seat on a chair with a laptop on her lap. Dr. Wascher is amazing, but super serious and stoic. I tried a couple of times to throw a few jokes out and he bit a couple times, but it was HARD. He asks again the questions I have been asked every time—my family history, any illness I may have etc. I ended with “Aside from the cancer, I’m a healthy person.” Ha!ha! I had to laugh after that—you know, just one minor health thing we call cancer. I must say initially I am taken aback by how serious he is, but honestly I also appreciate it, because I kind of don’t want my surgeon who is going to be cutting me to be a comedian and too relaxed. It’s confusing to me whether his stoicism is something I like or not. It makes me both uncomfortable and comfortable; uncomfortable because I just would rather laugh and feel like you’re my friend and have a chat, but comfortable because of the serious nature of the responsibility that he holds, it makes my faith in him as a surgeon strong. Well, he has me lay on the exam table and again my breasts are both examined. This time he’s calling out times and lumps nodules etc to the physician assistant as she types the information in the laptop. “Twelve o’clock left breast” “two o’clock” “under right nipple bundled nodules” etc. etc. Arms up and back down and then he presses on my stomach and then it’s done. Now, I get off the exam table and wrap myself and sit in a chair facing him as he sits across from me. The physician assistant is out of sight because the curtain blocking the door is right next to me and so we can’t see each other, but she’s right there taking notes.
Ugh! Dr. Wascher begins to talk medical and facts and issues and so I stop and say I need to get my notepad out and pen. He stops and I get comfortable on the chair taking notes and listening and tearing. Suddenly, I just feel so completely overwhelmed with…. I don’t even know how to describe it… I guess the best word is… FEAR. I realize I’m scared. This shit is really happening. I know it’s happening, but I thought I googled my way through what most likely would happen next—lumpectomy or masectomy and radiation at most. If he had just laid out those possibilities, I don’t think I would have teared so much. I did NOT expect the EXTRA information that I was completely ignorant of, and so it was like learning all over again I had cancer, but this time it felt a little bit worse. It felt worse, because when I first heard over the phone from the radiologist DCIS (ductal carcinoma in sitro) I googled it and diagnosed myself as being in stage zero- woo-hoo! The best stage to be in for cancer—I am good! Crap! Dr. Wascher begins to educate me on the whole picture and now I’m scared shitless and not only does he tell me we can’t determine what stage I’m in until after surgery, he proceeds to inform me of the possibilities that face me, and quite frankly I’m terrified, sad, and more sad and more sad and sadddderrrrrerrrerere- ha!ha! is that even a word? OK, trying to be humorous. I’m going to type from my notes now as this gets a little more technical.
He has diligently reviewed all my records. The pathology report shows not just DCIS, nope. I’m a little more special, and the pathology showed “high grade” DCIS. Because (I hate starting a sentence with because, but I’m doing it- just thought I’d share), it is high grade, this increases the POSSIBILITY that some of my cancer might be invasive and the biopsy only took a few cells that weren’t. Because it increases the risk, they tend to treat this kind of DCIS as if it were invasive, which involves two approaches: 1) removal of all abnormal tissue (lumpectomy) and 2) because of the higher risk, stage lymph nodes during the surgery as well. Stage means a biopsy of my lymph nodes to be sure there’s no cancer there. So surgery will consist of two incisions, one for the lumpectomy and another for the “sentinel lymph node biopsy.” The removal and/or biopsy of lymph nodes presents the risk of side effects including arm swelling and some other arm problems (notes not clear- I must’ve blanked out). He went into detail about a wire and small radioactive material being placed in me with special blue dye tracers which are 95% accurate to determine whether the cancer has spread to my lymph nodes. He educated me about the prior practice of removing all lymph nodes, but said new studies have shown that removal of all nodes did not make a difference and so that they just treat with chemo and radiation etc instead of removing it all. Too long to type now, but I hope you get the gist—they stop removing all lymph nodes.
They do not stage cancer until after surgery, because then they know whether it has spread or whether it is truly still in sitro (noninvasive). So I don’t know what stage I’m in until after surgery. Once they determine my stage then they will know how to treat my cancer. If it is invasive, then I will need chemo L *sigh* The only good thing about this is if I do need chemo- I get an excuse to shave my head!!! I’m seriously excited about that possibility – wanted to do it but was always chicken shit and everyone would think I’m crazy. Whereas, when you have cancer, it is totally acceptable! Ah, the little things that keep me happy J ha!ha!
I’m getting exhausted and I have to be at CTCA in Goodyear tomorrow morning by 9am (about 45 mins from my house with traffic) so I will try to keep this short so I can get home and sleep. Dr. Wascher explain that there are two things that make him concerned with my case: 1) my age (for those of you who don’t know, I’m a youthful 33 going on 17! Ha!ha!- I made a few age jokes with the Dr. and got a chuckle and even a joke backJ) and 2) I have dense breast tissue
He began with the dense breast tissue—the mammograms are less sensitive to dense breast, and so he recommends a MRI of both my breasts to be sure that nothing was missed in the mammogram. The downside of the MRI is that it is so sensitive, there is a 25% chance of a false positive, which is why it is not used as a standard for the general public. He feels, however, with my age, dense breasts and high grade results and multiple lumps, I need to get the MRI done. I will. We were going to try to get it done today which would have been great, but because I am expecting to have my menstruation next week (do you have a menstruation or be on menstruation? I don’t know, but you get the gist), and the high sensitivity of the MRI and proneness to false positives, we have to wait until at least one week after my period to try to have the most accurate MRI testing/reading as menstruation affects the estrogen and whatever in the boobs (ladies, you know boobs are more sensitive). So no bueno for MRI today, but scheduled for one on October 3, 2012 (enough time after my period). It’s about one hour per body part, so two boobs are two body parts so about two hours, and then 3 to four hour wait for results and then meeting with doctor. So that’s scheduled. Mom, you will be happy to know, I asked about my tattoos and I can still get a MRI with my tattoos (I know that doesn’t make you feel better about mine, but that was always one of your arguments against it- ha!ha!). OK, maybe you’re not happy still- lol! Just thought I’d put it out there J
Dr. Wascher’s second concern is my age L Shit! I don’t even want to say the polite “crap!” here- this part of today receives a full forced “SHIT!” Because I’m so beautifully YOUNG- lol! The concern is that I may carry more or one of a few breast cancer genes. FML. For those of you who don’t know what FML means, pretend it means “shit!” ha!ha! Everyone else, I’m NOT being literal, I love my life too much—even if I have the gene so stop worrying people, I just need to vent. This is where fear turned to terror… If I carry this oh so special gene (BRCA1 and/or 2), I have a 75-80% lifetime risk of breast cancer, 25% of another cancer within ten years and 30-40% risk of additionally ovarian cancer. Did I say FML yet? Kidding, a little… Women less than 50 years old with breast cancer have a higher risk of having the gene and women less than 40 years old have an even higher risk. FML. The gene, however, is more common in women of Jewish decent. Good for me (I think, I know I got potential German, Spanish and English blood in this mutt body of mine and doubt any is Jewish but you never know), but sorry to my Jewish sisters L. Asians are really low risk. Thank God for my Japanese grandmother- lol! SO- LONG story just long. I have an additional appointment tomorrow. What was originally just morning appointments has turned to practically full day. After 1pm I have an appointment with a genetic counselor at St. Joseph’s hospital, because apparently there are tons to consider before getting this test done. Although it is illegal for insurance companies to deny coverage to people with a genetic mutation, shit happens, so I take that risk if it is proven that I have the gene. Additionally, I probably won’t be able to have life insurance or afford it if I so have the gene (not sure I would with just cancer anyway so k sera sera). I think there are a bunch of other “side effects” in real life with this knowledge in my medical history that the counselor will talk with me about. I will listen to her, but I’m pretty set on getting the test done. I think it’s important for me, but also more important for my family members, especially the women in my family—I have tons of nieces and this is part of their medical history too. So I’m probably going to get it done. The problem is that only one place in the country processes the tests for the genes or gene (not sure how many) due to patent rights ethical and other crap (I’m sure it’s some lawyers fault- lol! Kidding!... a little J) so it will take 7 to 10 days to get the results back. This is where terror strikes me. Depending on what this test says will determine how they treat me. This gene is so horrible, not only would I consider double masectomy (which by the way, even with, you still have recurrence chances- who knew?), but I would also have to seriously consider having my ovaries removed. FML. This is where I just cry. Never really thought about how that would affect me, but bring tears to my eyes. At the end of the day, we don’t know. I very well may not have the gene (C’mon Asian blood, don’t let me down- ha!ha!). If I do, I’ll tell you one thing, I enjoy breathing too much to fight for ovaries and breasts--- who needs em! I need to make some big bucks though so I can qualify to at least adopt one day if I ever did want kids. *sigh*
Seriously, today was super productive in my mind, but draining nonetheless. Before today’s appointment, I was honestly more set on choosing Mayo clinic, because they are in network, and because my lazy self prefers to have all my medical records (cancer and non-cancer related) in one convenient spot, and that would be Mayo. I began today thinking, unless my appointment with Mayo goes drastically wrong next week, I’m choosing them. After meeting with the Scheduler at CTCA (I got a new person this time, but I saw Nathan (got the name of the missing teeth guy who made me smile and laugh again today)), I sat in the waiting area between the clinic entrance and gift shop and just cried. All my fellow college people, it’s really beautiful there, reminded me of Lotte Hall (and that was over 15 years ago, man! We were spoiled in college, we had some nice facilities-lol!) I digress again- sorry. After today, I am very impressed with Dr. Wascher and CTCA and how he is handling my case and ordering and explaining all the tests I’m getting done. He also wrote a book on cancer prevention that he said has a chapter on breast cancer that I should read as it is layman terms. I checked it out at the gift shop at CTCA and it’s $14.95. I have a 25% off coupon as a new patient and tried to use it, but the lady said the coupon is not applicable to books. My cheapass rarely pays full price for anything put the book back and decided to check out the Scottsdale public library- lol! (Gosh! I can hear my mom screaming now- BUY THE DAMN BOOK!- ha!ha! Sorry mom! Maybe tomorrow- lol! It is cheap J I’m just a bit mental sometimes- ha!ha!) So I went straight toScottsdale public library at the civic center. They don’t have his book, but they had a whole section on breast cancer and I sat and read through some and then checked out four books which I will read through this process (all my favorite price FREE and I get to return them after to avoid the hoarding potential in my home J). I need to research and not have anymore surprises—not sure I can handle any more. I need to educate myself and fight this and learn from those who already have. So that’s what I’m doing.
I’m sure I’m missing some things, and I’m sure you’re all tired of reading and/or most definitely have other things to do. Thanks for your indulgence, and I do request prayer, positive thoughts at least that I don’t have the gene. Don’t be afraid to tell me to remove you from the list if this gets to be too much for you (not everyone can take talk about menstruation and peeing in a cup), just sayin… Also, if someone you know wants to be included here and feels hurt I did not include them, Lord! Please let me know and I’ll include them. I’m not trying to be exclusive with my support network, and it will save me the pain of retelling and explaining. I am sure I’ve missed a few people, just let me know or feel free to forward along. OK, I’m done for real now. Like I began this piece with a quote from Mother Theresa—wish God didn’t trust me so much…
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