Wednesday, September 29, 2010

It's National Previvor Day

Today is the first ever National Previvor Day. National what? You're probably wondering what the hell a previvor is, aren't you? Sounds like some kind of made up word. Well it is and I've blogged about it before, here. In a nutshell, a previvor is someone who has a predisposition to a disease such as cancer but has not gotten it. Steph describes previvorship well in her blog, here. I read a lot of blogs and they are all great and all written a little different and I appreciate all of their perspectives. One of my favorite posts, and one of the first that I read is one where Steph describes what it feels like at the plastic surgeon's office. It really hit home and I have it taped inside my journal. It shows one aspect of being a previvor: the anger and frustration we have with our options on how to beat cancer to the punch.

I consider myself a survivor and a previvor. What does previvor mean to me? It means that just because I had a little bit of breast cancer doesn't mean it's over for me yet. I've had two relatives survive bc only to die from a different cancer. It means that not only am I at risk of a whole host of cancers but so is my family. Only 4 of us have tested so far and thank god my little sisters are ok. That means all my nieces and my nephew are in the clear. And I thank god my twin has already undergone pbm and bso although I have not returned the favor to her! Being a previvor means you worry a lot about your family and yourself. And it usually means that we have lost family members to the fight, many whom never even knew about this mutation. Knowing you are a previvor means that you can take action. Surgery, drugs, tests, prayer, crossing your fingers, a little bit of luck...that is what it takes to previve.

They just created National Hereditary Breast and Ovarian Week and National Previvor Day a couple of weeks ago. We need to create awareness about hereditary cancer. Although the brca mutations were discovered about 15 years ago you'd be surprised at how many doctors and medical facilities are clueless about them. My twin's pcp didn't know anything about it and had to consult with her myriad rep and read the fact sheet. That's reassuring! My little sister was told at her giant breast care center that she need not bother getting a mammo every year because the breast cancer was on my father's side of the family. That's ignorant! I knew of my father's breast cancer for the past ten years and never heard that it could mean bad things for me. That was potentially deadly! So while you all might be so sick of the breast cancer commercials that flood the month of october, I hope that the hboc commercials will start as well. Maybe the message will get through to our health care providers and to some poor soul who knows their family history is fucked up but doesn't know why.

What am I going to do in honor of this week? I need to finish telling my family that we have a brca2 problem. Yeah, I'm ashamed to admit that there is still one aunt out there that I never told. I don't know her and I don't even know how many kids she has. I didn't know my uncle. He died pretty young from stomach cancer. Who knows if he carried the gene but my guess is yes. I told most of my family last fall that I tested positive. It was a really difficult thing to do. I felt like this bad news was all my fault and that I would be ruining their lives. From my aunts and uncles I received sympathy for my breast cancer but no mention or questions of the mutation. I worried that they had not passed on the word to their children and I was right. From some cousins I talked to I found out that they all knew our family history and all worried about breast cancer and had been getting mammos. I felt a little let down. I didn't know my grandpa and two aunts had also had breast cancer. I hadn't been getting mammos and neither had my twin. I also felt discouraged because I don't think, a year later, that anyone outside of my sisters has tested for this. And that's up to them but I also don't think they have told their kids about it and if that is the case, that's not okay with me. My cousins are all older than me and their kids are all hitting their twentys. So yeah, pour on the commercials, make some giant billboards and spread the fucking word.

Thank you Sue Friedman from FORCE and everyone else who pushed to make this happen.

Monday, September 27, 2010

don't blow up...

warning: this is a vent post. f-bombs will be dropped.

Don't blow up, don't blow up, don't blow up (my mantra while on the phone with insurance company). Don't cry, don't cry, don't cry (my mantra after hanging up with insurance et al, companies). Unfortunately I don't work on mondays so that is the day I get to deal with any medical crap I've been putting off. Believe it or not I'm still dealing with misc medical bills from my last surgery in february. I had to have some additional path work done in april because of some strange healing my body was doing. I don't even remember the name of the cells they scrapped out of me at my doc's office. I had put that all behind me. The office visit was covered as part of my surgery costs. But my doc sent the path to the hospital (because it is right there and quicker) instead of a private lab, thus my insurance company wants to stick me with the bill as part of my deductible. I say a lab is a lab is a lab so why should I pay for it? The hospital says the same thing so I'll be going for round three of phone calls after already talking to insurance, doc's office and hospital a couple of times. At the very least, if I don't win my hospital said they would knock 25% off the bill. So one lesson learned right there: find out from your insurance company which labs they will allow you to use and then make sure your doctor's office only sends your shit to those labs. Yeah, I know most of us assume that once we find a doctor that is in-network that our work is done but it ain't. We must ask about every procedure and every lab and every other thing that might get billed. Did you know that if you're having surgery that you'd better make sure that everyone involved is in-network? Including the anesthesiologist and the radiologists and the pathologists. It's a little hard to do sometimes because we don't even know all the details and who is even involved outside of the doc we searched so hard to find.

They tell you not to have regrets after we make our decisions because we do the best we can at the time. We don't have the luxury of hindsight. But I do have regrets. I wish I had kept my original insurance plan. I used to have in-network only insurance with no deductible that covered 100% of my bills. I only was responsible for co-pays. It was beautiful and stress free. I paid $50 for each lumpectomy and my breast mri. That was it! I wouldn't be worried or responsible for this dumb lab bill right now. I would have saved $1800 on my hysterectomy. But no, I was all hell bent on going to an out-of-network plastic surgeon so I switched coverage. I'm not sure what I was thinking cuz I didn't have the money for that surgery let alone money to travel and stay out of town for the ten days it would require. And I got stuck with a huge bill for seeing that out-of-network surgeon. $450 for a one hour consult. Yeah, I ended up only having to pay for half of it but I would rather have used that money for snowboarding or groceries. Oh well, at least I saved $900 by skipping my radiation treatments. If I could do things over I think I would have paid $100 to have my diep and mastectomies here in town and be done with this whole mess. Talked to my insurance company to make sure my upcoming breast mri is covered and find out that I will be responsible for a deductible for that. Possibly $350 but I'm not sure. It's all a little confusing to me. So while I had the best intentions to get that done soon, I think I will have to wait til january because I am not spending that kind of dough on a deductible this late in the year since it all starts over from scratch again in january. Again: wish I had kept my old coverage!!!

I am tired of this fight. Oh yeah, happy fucking Hereditary Breast and Ovarian Cancer (HBOC) week.

Wednesday, September 22, 2010

book review: Meet Virginia: Biography of a Breast

If you are like me, you prefer to be knocked out for your surgeries yet you wonder what the heck went on while you were sleeping. If you are like my wondertwin, you wish you were awake and able to keep an eye on everything going on and maybe even give directions to the surgeons. You can find some surgery video online but sometimes that is a little too much detail. I remember looking at video of a hysterectomy while I was still recovering from mine and deciding that it was just too painful to watch as they inserted instruments and had blood squirting everywhere. Perhaps that isn't the best thing to see immediately before or after surgery! Most of us are scared enough as it is.

What if you could look at some still photographs, a little less gory than video, that show you what goes on in the operating room? I was very curious indeed when I heard of a new book that follows a woman, photographer and all, into surgery as she undertakes a mastectomy with immediate reconstruction.  Meet Virginia: Biography of a Breast by Jay Agarwal, MD (reconstructive surgeon), Ravinder Ahluwalia (medical student), Leigh Neumayer, MD MS (mastectomy surgeon) and Anne Vinsel (photographer) sheds some light on the mastectomy and reconstructive process.


The book facts: I was going to try and impress my librarian dw by listing the isbn number and all the publishing details but this book appears to be self-published. So here's what I found, 176 page, hard cover (coffee table book size) published in 2010 and selling for $39.95 USD. It can be purchased on the website meetvirginiabook.com. I wish I had thought to count how many pictures there are, but I didn't and I don't have a copy of the book to do so now. I can tell you that the majority of the book is photographs with brief descriptions provided by either Dr Agarwal, Dr Neumayer or the patient.


The patient facts: While the name of the patient is given in the book, I'm not sure she wants her name all over the web, so I'm leaving it out for her privacy. I'll refer to her as dp (dear patient). I'd like to thank her for being brave enough and generous enough to share her journey with us. DP was diagnosed with cancer in her left breast and undergoes two surgeries. No radiation or chemotherapy were needed. The first surgery is a total skin sparing mastectomy (kept the nipple) on her left breast with expander reconstruction. In this surgery she also has a previous implant removed from the mastectomy side and undergoes sentinel node biopsy. The second surgery consists of the removal of previous implant on the non-mastectomy side and replacement with a new implant, and exchange of expander with a silicone implant on the mastectomy side.


Author notes: This book is meant for breast cancer patients, families and friends in the hope that it will make it easier to understand what happens during breast surgery. It is meant to be used by the patient in conjunction with her doctor. Photos were taken during the actual surgery as well as before and after.


The rest: I first heard about this book from my local FORCE monthly newsletter. Just so happens that it was written by some doctors at the big cancer house I frequent (although none of my doctors reside there). I admit that I do like the big cancer house and like all the free counseling they give me and they have helped me out a lot but this is an unbiased and unsolicited review.


I don't have $40 to shell out for a book and it wasn't in the cancer library holdings yet so I contacted Karen, my local FORCE coordinator and she was kind enough to loan me her copy. Did I mention that this book is a nice coffee table size? Sure would make a conversation piece if you do decide to display it as such! As we are standing in the middle of the library, Karen pulls out her book and bam, there is the naked bust of dp for all to see. I am pretty used to naked boobs by now but not used to seeing them on a book cover and out in public like that! There is an alternate book jacket if you flip it over. This one is of dp in surgery with 3 people in scrubs working on her. This photo just exposes her left breast a little bit.


The book does have an intro about different types of breast cancer and goes into a little detail about how to make a decision on which type of mastectomy is best for your cancer but the info provided is really just a starting point. There are some good books out there that go into greater detail about your surgery options; see the left side of my page for a few resources. Now for the heart of the book and what we've all been waiting for - surgery photos. We see pics of dp at all stages from pre-surgery to the final outcome after the exchange is made and healing is underway. Some of the instruments used during surgery are shown and explained including the geiger counter, skin hooks, electrocautery wand and retractor. Detailed photos show the many steps in dissecting the breast tissue from the muscle and skin until it can be pulled out from the skin envelope. (Not as gross as it sounds, kind of cool in fact). We see the process of the human cadaver skin being used to create a pocket for the expander and eventual implant. Photos capture how the expander gets stuffed through the small incision into the pocket. The magical part is how small the incision is in comparison to our whole breast and how they are able to get everything done in this small gap in our breast. Sometimes you will see at least 6 hands dancing above the breast all doing something different yet working together. Some of the photos stand out in my mind such as when the old implants are squeezed out of the incisions but one I won't soon forget is when Dr N is checking the skin to make sure she got out all the tissue. You'll know which one I'm talking about when you see it!

I know I talk about the "slice and gut" and "cutting the bitches off" in my blog because that is how it feels in my heart. But when you see these photos you will be amazed that it isn't like that at all. Even as dp is on the operating table with no implant or breast tissue left, she does not look deformed. Smaller, temporarily, but still whole and still beautiful.


This book is about one woman, one type of mastectomy and one type of reconstruction. It does not delve into the possible complications of surgery or the loss of sensation or recovery times. There are so many options out there, just for incisions alone so do your research. Read some reconstruction books, read the message boards and talk to as many surgeons as it takes to find the one right for you.


Wrap up: My faithful readers all know by now that I don't like surgery and am kind of afraid of it. That said, I did not find this book scary. If you are especially squeamish, you might not like the first part where they are removing the breast tissue. I thought this was a great book and wish they had one for each type of reconstruction. I didn't understand everything they were explaining but it would be a great book to read and then take to your doctor for further explanation. It might help people who don't know what questions to ask. I would love to see this book in every surgeon's office.

Monday, September 20, 2010

moab century ride report:hot diggity damn!




I completed the moab century on saturday. This was a bike ride to raise money for livestrong, the moab cancer center or a cancer program of your choice. With apologies to dw who couldn't make it because she is in california, I have to say that it was an amazing day! The weather was perfect (a little warm towards the end but that's why an extra water bottle comes in handy to douse yourself). The course was ridiculously beautiful. I did the rolling 68 mile route along the colorado river on highway 128. I chose the 68 mile course in part because the 100 mile course has a "hill" called the big nasty and has an elevation change of 3000 feet within a 7 mile span. Just didn't sound like it would be fun, but who knows, if I actually train for it maybe I'll be up for the challenge next time. I had a blast tucking and coasting down the big hills and resting my legs before having to work a bit to get up the next hill. Red rock surrounded us the whole way and we were treated with visions of pinnacles and the mighty colorado river. Many of the riders were with Team in Training from states all across the country. TNT is an organization that helps you train for different athletic events and in turn you help raise money for The Leukemia and Lymphoma Society. You don't need to have cancer or even know anyone with cancer to be involved with their group.

Before the event we had the chance to write names of our loved ones on a board. People we were riding in memory of who lost their fight to cancer and people we were riding in celebration of who have survived the fight. I rode in memory of my mom, both my grandfathers, an aunt, 2 uncles and a cousin. I rode in celebration of my dad, 2 aunts, my sister-in-law, my previvor wondertwin and myself. I also rode for all my loved ones - my support staff, if you will. What do you call your wife/husband/partner that helps you through all this? What about the rest of your family who have to watch all the suffering, take care of you when you are sick and pick up the pieces and try and carry on when you are gone? When my mom got cancer I remember being strong and believing that she was going to make it even though they said no lasted more than 2 years with her cancer in that advanced stage. If anyone could fight it, my mom could. But she didn't. And when my dad told us less than 2 years after her death that he had cancer, I remember my sisters and I all got hysterical. One of my brothers tried to soothe us and he got screamed at. My poor dad did not find any strength from us! And when I told my little sister that I was coming home to visit 2 weeks after my lumpectomy she was suspicious. She asked me was I really just coming home for a visit or was I coming home to tell them that I was dying? Cancer takes its toll on everyone.  I think I would have called the "survivors and previvors" fighters since really we are always on the lookout for what might happen next and I would call our families and loved ones the survivors.

If you are ever in moab I highly recommend driving (if not biking) along route 128, a designated scenic byway. It is well worth the time. There is no shoulder on the road so be careful if you are biking on your own and not part of an event. The road is very twisty and even though the speed limit is only 45mph you will be dealing with tourists enjoying the view instead of paying attention to the road or locals driving way too fast. You can also raft down the river and get the same great views, if not better. There is a raft trip in june that is a fundraiser for susan g. komen, if you have the opportunity, go! I've been to moab countless times and this was my first time on this beautiful road. I can tell you that it will always be a part of my itinerary on future trips and in fact I drove home that way today even though it is a little bit out of the way.

What a difference a year makes! The leaves are starting to turn here which made me think of a favorite hike of mine, stewart falls. DW and I hiked it last fall and we were in a much different place then. At the time, we were very sad and just going out and doing things to try and find a minute of happiness. Now I find myself pretty damn happy with just some stress on the side. I have to laugh when I look back at last year's post and read that I had just decided to go ahead and cut my boobs off! I guess I change my mind a lot. I've been thinking of this whole idea of happiness lately because of some recent deaths of family members of people in my bike club. One lost their mom and another just lost their son in the war. And it is also almost one year since my friends lost their little boy and they are still suffering deeply. I don't want to compare what I've been going through with the loss of a loved one. That hurts on so many levels. I've been there. I lost my mom. I just want to say that whether you are grieving from the loss of someone close to you or grieving changes in your life or some other difficulty, don't give up hope. Things will get better. Your open wound will start to heal and scab over. One day that scab will fall off and maybe leave a scar. Some days that scar might be itchy or burning and irritated but most days it will be ok.

Been trying to figure out how to attach my pictures to my blog now that I gave up my data plan on my phone to save a little money. I used to just text them to my email but that will cost me now so going to try and text them to someone who has a data plan and have her email them to me. Annoying but I have some nice pics from the bike ride. I don't miss having internet access on my phone except for that one feature!{note: bought a microsd card for under $10, problem solved}

This is post number 100! Who'd have thunk I had that much to say? Tune in for my next post where I will review an exciting new book about breast surgery and what goes on in the OR while we sleep.

Tuesday, September 14, 2010

my drug addiction

As you can see by the picture, I have a drug problem. I shoot up at least 3 times a day, sometimes more, ideally 4 but I try and skate by without my lunch shot. I poke my fingers at least 4 times a day, ideally more but heck, I get so sore and it's such a bore. Damn, I'm in a happy mood today! So where's this story going? I went to see a nutritionist yesterday. Not my regular one, whom I love, but the free one at the big cancer house. Yes, my insurance covers a nutritionist but I have to pay a $30 copay and I see so many docs it really starts to add up so I love to take advantage of free stuff. And besides, this one specializes in cancer crap. My main goal was to find a way to replace some of my supplements with real food. I'm taking a daily multi-vitamin, fish oil, glucosamine and calcium with vitamin d along with my insulins, thyroid med and pills to protect me from heart/kidney/artery disease that can be complications of diabetes. Have I mentioned that I hate medicine? When I was younger I couldn't even swallow aspirin and now I take pills that could choke a horse. Back when I took just 2 tiny pills I tried taking a multi-vitamin but stopped because mentally I felt I was overmedicated. I take 9 pills now and it just blows my mind. Physically, I feel great and can't tell I am on anything but I still have a hard time taking all this shit. I think I was a christian scientist in my last life or hoping to be one in my next life I guess.

My appointment didn't go exactly the way I planned. Turns out that the nutritionist likes all the supplements I'm on. The fish oil (omega-3 fatty acids) is thought to be good for your heart and brain and may reduce the risk of some cancers including breast cancer. It's not that easy to get my daily dose (1000mg) in through diet and it's thought that the body actually uses it better through the pill form anyway. I take 1200mg of calcium with vitamin d added in. That is the recommended daily allowance for me in my new post-menopause state for bone health. I have to take this in two doses because the body can only absorb about 600mg at a time. Looks like I might be able to get about half my needs in by diet and drop it down to one pill. I'm not sure I can cram enough calcium in my diet to do away with both pills but I can go day by day and substitute a pill as needed if I'm not eating enough. The nutritionist flat out said that she recommends all adults to take a multi-vitamin for general health since it is hard to eat a diet so well-balanced as to get all the weird stuff like magnesium and manganese, etc. She did say to beware of some of the brands which offer up 300% of your daily needs. 100% is just fine. That leaves the glucosamine for joint health. She said there are no studies proving its effectiveness but some people swear by it. I've been taking this on and off for several years because of the beating my body has taken from various sports. I personally can't tell if it works for me. DW swears it helps her feel better but she thinks that joint juice (liquid form) works better than a pill. I started taking it again when I started working at the garden because I ache now and might as well give it a shot. Once I stop working so hard and my body feels better I'm probably going to stop taking it again since it's the only thing I can really cross off of my drug list.

In conclusion, my nutritionist said she really thinks I should continue to take the multi-vitamin and the fish oil and that I really should try and get 1200mg of calcium in my diet, which means I will probably need to take at least one 600mg pill. But she says it is good to try and eat a large variety of vegetables and fruits anyway not only because of the low fat/calorie benefits but because of all the phytochemicals that help support overall health and offer some cancer protection. She also showed me a pretty cool website that helps you track the nutritional value of what you eat each day if you fill out a daily log. Say for example you ate cheerios, a banana and milk for breakfast. You click on your serving size and it figures out what percentage of your daily recommended vitamins/nutrients you had as well as calories, fat, etc. I'm going to fill it out for a week or so and then email it (there is a feature that allows you to email your data to other people) to my nutritionist so she can give me some advice on how to work on any deficiencies. It is called NutritionData and it is free.

Wednesday, September 8, 2010

no shit, sherlock

You'd think because I haven't posted in so long that I've had nothing to say. That's not the case. I've had so much running through my mind I just don't know where to begin and at the same time, I can't get the words to flow out of my head and onto the screen. Finally getting back to my journal which is great but my hands are still hurting so writing is hard. I find it easier to type, although I end up paying for that later. I guess it is good I will be moving on from my wonderful gardening job soon as my body is falling to pieces on me. I'm hoping that my aches and pains in my knees and other joints are attributed to my job rather than the lack of estrogen starting to catch up on me. I was feeling pretty good prior to the garden (with the exception of some hand problems from my bike).

So lets talk about the recent brca study that came out in the journal of the american medical association. It states that preventative surgery (mastectomy and salpingo-oophorectomy) increases survival rates in brca1/2 mutants. This study has caused quite a stir with the media with a lot of tv shows and papers running stories.
ap
cnn
npr
abc
cbs
fox
jama video
 
For those of us in the mutant/high risk population, the study results aren't much of a surprise. It's kind of like when ellen came out as a lesbian. No shit, sherlock! I think most of us already knew that getting rid of our boobs and ovaries decreased our chance of getting cancer and increased our chance of dying of something else. Otherwise what's the point of cutting them off? The interesting thing about this study is that they looked at brca1 and brca2 separately so that now mutants have a better understanding of how surgery may affect their cancer risk based on which gene mutation they have. For those of you who don't know, brca1 and 2 gene mutations are very similar yet they do have some big differences including the percentage of risk of breast and ovarian cancer as well as the type of breast cancer you may usually get.

This study also looked at how removing your ovaries can have an added benefit of reducing your risk of getting breast cancer. This is something that they have known about but now we have some breakdowns on which mutants it helps the most. Since I never did end up cutting off my boobs, I was banking on the fact that getting rid of my ovaries reduced my risk of bc recurrence or new bc. According to the study, removing the ovaries reduces bc risk in mutants who have not had bc yet but doesn't have much added benefit to those who have already had bc. I was very upset to learn this but after reading the study a little closer and learning its limitations, this might not really be the case. The study looked at women who have had bc but did not look at what kind of treatment they had for their cancer. So some of the women could have had chemo (which often results in menopause) or tamoxifen (an estrogen blocker). Both of the treatments can result in the same benefits that removing the ovaries do. So still crossing my fingers that I have bettered my odds of not getting any more breast cancer.

Ugh, my posts feel really disjointed lately. My mind feels like it is going to explode. This surveillance thing is not easy. Although I do not feel worried (yet) about my upcoming mri, I am constantly thinking about my breasts and what to do. Being on the surveillance route feels to me like a temporary thing rather than a permanent thing. Like a person that does not have health insurance taking a gamble on how long they can go without it before it comes back to haunt them. I may have decided not to have surgery for now but I am constantly looking at reconstruction options and surgeons, etc. I'm not the only one in this boat. If you take a look at that study again, you will see that the majority of us are not going through with surgery, even though it shows it saves lives. Why is that? It's not an easy thing to do. We like our body parts and we fear the surgery, the pain, the recovery, the loss, the costs.