Tuesday, December 22, 2009

meet the tods

Yesterday I finished up most of my pre-op testing. All I have left is some blood work that needs to be done a couple of weeks before the big day. I am looking at that and maybe one other medical tod appointment over the next 50 days. Kind of anti-climatic leading up to the biggest surgery of my life! Things are going to start getting real hectic though. Still need to make travel arrangements, figure out what to pack, go to cali, clean this place up, and try and stay healthy! I am starting to get nervous again and my sleep patterns are starting to slip. Put a request in to my bcsw to see her after the holidays so add another 1 or 2 tod visits before surgery.

Whether you need a whole team of docs or just a couple key docs it is nice to find some you like before you are faced with an emergency. It's a good idea to establish a relationship with a primary care doctor and a dentist. These are the two you will probably see the most so make sure you find someone you like. Here is a little breakdown of my team:

the primary care physician (pcp) - I researched hard looking for this doc when I first moved here. It is hard to find much info online. The docs that did look cool either weren't taking new patients or weren't taking my insurance (we had weird insurance back then but fortunately dw's company switched to something better) so I took a gamble and chose this doc because I thought the practice was in a gay friendly area of town. Turns out it's not but she is gay friendly and even more important, she is exactly what I need. She is very attentive, listens to my concerns and keeps the pressure on to take care of myself. And she gets it. She understands what a tough year it was. She asks about my mental health, not just the physical part. I also like this office because it is easy to get an appointment, they handle all the insurance stuff and they draw blood in the office so it saves me a trip to the phlebotomist.

the dentist - this guy was my sis in law's dentist. Her new insurance doesn't cover him so she goes somewhere else now but I'm happy with him. He is very easy to get in to. Doesn't force me to have xrays if I don't want them. Runs just a small office and he does all the cleaning himself. His assistant is just that, an assistant. He seems like he knows what he is doing and as a side hobby he restores cars. His office handles all the insurance stuff. What's not to like?!

the general surgeon (gs) - she was referred to me by my pcp, who actually is a patient of hers because she has atypical cells in her boob and is keeping close watch on it. She is good at getting the emergency appts squeezed in as needed. DW and I were not expecting much when we went in the first time. From my experience with my hand surgeon, you wait for about an hour to get in then he sees you for 30 seconds. This is not the case here. She is willing to spend as much time as you need talking over things and wants you to ask questions. In fact, if you don't have questions she wants you to write some down and bring them in at the next appt. She returns phone calls promptly and is willing to do anything to help me out like writing letters to my insurance company even for surgerys that she is not going to perform. Her office staff is excellent. So nice all the time and very prompt at getting me any paperwork that I request. If I wasn't cutting off the boobs, I would have been very satisfied with the outcome of my lumpectomy. The scar is in an unobtrusive spot and growing more invisible by the day and my boobs still match pretty closely. We couldn't be happier with our gs.

the gynecological oncologist (gyn/onc) - referred by my gs. Also highly respected by my ps (and vice versa). Wasn't too hard getting in for the first visit. I have only seen her once but will be on an every 6 month schedule at least until I remove my ovaries. Her office is in the same hospital as my gs, gi, breast center and heart center so she has access to all my records which makes it very convenient for me. I am comfortable with her, as much as anyone is comfortable with a stranger sticking their hands in places that are private. She gave me her candid opinion about surgery without coming across as rude or pushy and I respect her for that honesty.

the boob goddess, aka the plastic surgeon (ps) - I found her on my own. Good old google! She has a website and I have been on a couple different cancer boards looking at threads from some of her patients. I haven't found any bad comments yet. Her credentials are amazing. All the things she has accomplished and given of herself puts me to shame. She is only a few years older than me! She has offices in chicago, new orleans, charleston and here in slc but only does the bilateral reconstruction in charleston and new orleans. DW and I met with her here in September. We feel very confident that I will be in good hands in February. And I didn't have to settle for looking at pictures of her work. She arranged for one of her patients to meet me at the hospital right before her second stage surgery. I got to see her reconstructed diep boobs in person. I have to say they looked really great. Except for the fact that she was missing nipples and had some scars, you wouldn't know that they were not the real thing. I have also spoken with another one of her patients, who I found through FORCE, and she was extremely happy as well. Found another one of her patients through a blog and she also said she would do it all over again with her as well. She is also highly respected by my gc.

the genetic counselor (gc) - referred by my gs. She works at the big cancer house and I get her services for free! I had already tested positive for brca2 before I saw her and did tons of research so thought I knew everything there was to know but she does know much more than me! When I saw her I hadn't decided if I wanted to do the pbm yet. I was thinking she would help me decide but she was so neutral that it wasn't a driving force. Although I guess some of the info I learned did help me make my decision. I only saw her once but I have emailed her several times as questions come up and she is very good at getting back to me.

the breast cancer social worker (bcsw) - I wasn't a believer in therapy. I like to gut problems out and am very good at getting over things and burying them away. But I knew I would need some help in order to get through this surgery. Surgery is something I want to do but I'm scared of it at the same time so I asked my gc to hook me up with some help. My bcsw is also at the big cancer house and free! I only get her for a limited time though as she offers short term help but it is long enough to get me to February 9th. I did not think that someone that isn't brca+ could understand what it's like and really help me out but I was wrong. It has helped me for sure.

the oncologist (onc) - this guy is well credentialed. Can't say that I instantly bonded with him though. But that could just be that I don't like where he works! It's unnerving going to a place where radiation and chemo patients are hanging out. No offense to any of those patients but it is scary thinking that could be me. I only need to see the onc once a year I think. Not really sure why I need to see him or if I will be back. I'm not on any cancer drugs, don't need radiation or chemo and most of my high risk parts are going to be gone so I may be drop kicking this guy off my team:)

the ophthalmologist (eye doc) - I have been seeing an eye doc rather than just an optometrist ever since mutant 1 came along. I value my eyes over any other part on my body so I always make time for this doc even if I don't have insurance. Now I also need to watch out for melanoma of the eyes as it is not just a skin problem. My doc here was recommended by dw's coworker and coincidentally my pcp is one of his patients as well. Oddly enough, one of his assistants is brca+ as we discovered when asking her about the effects of tamoxifen on the eyes.

the dermatologist (derm) - this guy is my newest team member. I will be going about once a year to check out my moles for changes. My brca2+ brings an increase in melanoma risk as well as the fair skin that I inherited and this high altitude doesn't help either. I like this guy. He is very kind and also said my skin looks much younger than my age. How can you not like someone that says such nice things to you?!

I have more tods but most of them I will probably rarely see and this post is long enough as it is. I will leave it at that for now.

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