Thursday, December 30, 2010

reflections

The year has managed to slip past us once again. And once again I am glad it is over and looking forward to the new year. More so this year because I'm looking forward to change and progress rather than trying to forget a shitty year. Because 2010 was not so bad. Well, parts of it were but the mid-to end were pretty good. I think I've finally found "normal" again or at least have gotten used to my normal. You know you feel better when you now think that winning the lottery will solve all your problems! There was a time when I couldn't even feel hopeful with that ticket in my hand. When my problems seemed insurmountable (is that a word)? Yeah, my past and future health problems don't weigh as heavy on my mind anymore. I say this as I shed a layer for yet another hot flash! And I say this a day after I dreamed I got more bc. I guess my impending breast mri is weighing on my subconscious a little.

Seriously though, these past couple of months have been pretty stressful as we've finally taken a look at the toll this ordeal has taken on our finances. Most of that toll has been from me not working and from buying expensive mental health snowboarding tickets and new bikes to sweat away our worries. At the time I knew we couldn't afford it but I didn't care. I couldn't worry about anything but myself. That's why I know things are better now. I've been under a ton of stress yet don't feel depressed at all. I feel pretty happy in fact. Spent the last couple of days applying for jobs and feel pretty hopeful about that.

I've learned a lot about stress and coping over the last year and a half and I'm trying to put that knowledge to use. Got rid of a major drain on our resources by selling our beloved truck (the honda ridgeline). It was very useful in ny and ut and so much fun to drive in the snow and on the dirt but we don't need it here. It still had some value so we were able to trade it in, pay it off and pay for most of the next three years of a lease on a toyota prius. Yup, the nerd-mobile:) Actually, when you look at the gas savings, it's almost like we are getting paid to drive it each month! Just have had it for a few days so we'll keep you updated on how we like it. Sounds dead quiet though so I do worry about running over some pedestrians who will inevitably step off the curb without looking, just like they do when I'm biking down the street! I tell you it is a relief not having that truck payment anymore.

Some of my other stresses have come and gone in the last two weeks. I passed my certification test for being a nursing assistant! The test itself wasn't worrying me, rather the fact that I didn't have my cali driver's license was stressing me out. I was afraid they wouldn't let me sit for the test because I hadn't gotten my picture id in the mail in time, but it all worked out. And then a few days before my test, my left thumb started triggering badly. What that means is that my thumb was locking in an odd position whenever I tried to use it. If you've never had thumb problems, you may not realize how much humans depend on them. From tying shoes, to opening things, putting on contacts, pulling up your pants, etc. Needless to say, a thumb problem right before my skills test was not a good thing and my stress level was off the charts. But I managed to get in right away to a surgeon who did give me a cortisone shot to try and reduce inflamation and then went to dw's chiropractor the day before the test and managed to get through the day without a problem. Since then, I've been two more times to the chiro and my thumb is not only feeling better, it hasn't been locking up anymore. Too soon to say if it's been healed but I'm pretty hopeful that no surgery may be necessary. DW's chiro is actually out on injured reserve but his fill-in, dr p, uses the same graston and active release techniques that he uses. DW swears by it and now so do I. They not only do the normal adjustments, but work on getting rid of all the old, built up scar tissue we all have from the years of wear and tear on our bodies. I would have started going sooner if I knew that my insurance covered it. Wish I had been doing this once a week instead of the pt sessions I was paying for all summer. I think the results are much better.

Another big stress that will be off my mind in a couple of days is my new insurance! Not only will my insurance (through dw's work) be free, but my mri will be too. And my drugs are going to be substantially cheaper. I think my drugs are going to cost about $100 a year rather than $1000! Hell yeah! So even though we're going to be tightening our belts to pay off some bills, the future looks brighter.

One more stress factor we are getting rid of next month is our living situation. We will be subletting an apartment from a friend and it will be in oakland. So happy about moving back to the hood and being closer to our friends and the bay and having some room of our own. It's been a godsend to be staying with the in-laws for these last few months but the new place will be a little less crowded for all involved! And ready to finally settle back into cali. A place of our own will allow that to happen. Too bad we got rid of the truck before we moved all our crap;)

With all the stress hitting me I try and remember what helped me before. Music, long walks with the dog and dw, the gym, the bike, friends, family, patience, the garden, writing. I look forward to 2011, my new apartment, game nites with friends and family, a new job, classes and a step forward to my goals, new friends, old friends, less excess, new experiences, more fun. Happy New Year everyone!

Sunday, December 5, 2010

christmas in cali

It's a little different my second time around in cali. The first time I moved here it was at the beginning of the summer. By the time winter rolled around I was used to cali and didn't miss the snow too much. And I had come from minneapolis. A frozen tundra in the winter with very little decent skiing close by so I wasn't missing much. Now, after spending the last five winters in ny and utah, with an abundance of snowshoeing and snowboarding, we are experiencing a bit of loss here. The christmas lites on the houses are pretty but seem out of place among the palm trees and green lawns. We saw dozens of cars today sporting christmas trees on the roof racks. Just not the same when it is almost 70 degrees out!

We've been stressed out lately by various things and feeling a little homesick so decided to make some fun this weekend. We went and saw the movie 127 hours yesterday. It's the story about the guy that was doing some rockclimbing in canyonlands (utah) and got his arm stuck between a boulder and a rock wall and had to cut it off to save his life. We wanted to go see it so we could enjoy some utah scenery and it was full of beautiful shots of slickrock and slot canyons! Then today, instead of feeling sorry for ourselves that we have no snow and no money to drive to tahoe to enjoy that snow, we decided to take a drive to half moon bay and enjoy the ocean instead. We both love the water and are living inland right now instead of in oakland, so we don't get to see it everyday. It turned out to be a really nice day with just a little rain and pretty warm out. The leaves are still gorgeous here and some farms still have pumpkins laying in the fields. Doesn't feel like december yet here but I know all our friends and family in ny, mn and ut are saying something different!

Monday, November 22, 2010

15 years in the making

15 years ago I seriously thought about entering the health care field as a physical therapist. I went as far as taking a couple of science classes and putting in 150 hours as a volunteer in a hospital and sports rehab clinic. I think I would have enjoyed being a pt but was discouraged by the thought of going back to school and nixed the idea. 3 or 4 years ago I started thinking once again about the health care field. This time I was considering pt or nutrition but again the thought of school slowed me down. I really don't like sitting in a classroom and I also don't want to be a broke student again so the thought of school doesn't make me happy at all. I didn't really nix the idea of pt or nutrition this time, I just didn't make any moves.

So here I am once again, thinking things over. I thought about social work for a ny minute. Mostly because mine helped me so much and partly because I wouldn't need so many prerequisites to get into that program. I often find myself thinking about new careers when I move to a new area and have to start looking for work, as is the case right now. And I have finally made a move towards that career in healthcare. A lot of factors have pushed me over that edge of indecision. For one thing, I found myself applying for the same job as I did years before. I have been working as an accounts payable clerk for the last 8-10 years and while I am great at it, I really can't go further into the accounting field unless I take more accounting classes. And while I love math and loved the hectic pace of ap life, I always felt that if I had to work holidays and crazy hours (to meet deadlines) then I wished it was for something more worthwhile like saving lives or something. More importantly, I found myself applying for jobs that I wasn't qualified for at all, such as patient care assistant at one of the hospitals. I actually called the hospital to see what I could do to try and get one of those jobs and I discovered that you can take a course to become a certified nursing assistant (cna). Yes, in as little as 5-8 weeks I could get enough training in and take a test and start working with patients/residents.

After much research and some soul searching and a leap of faith, I am now a week and a half into my cna program. I have already put in 25 hours in the classroom and 16 hours in at a skilled nursing facility and am loving it so far despite my inadequate bed bath skills today that left me sweating (and not from a hot flash). I have to admit that I was a bit nervous that I had to put in my clinical hours working with the elderly as I have posted before that I'm a bit afraid of them. I've never been around the elderly too much. None of my grandparents lived near us or lived too long. My one grandma did move in with us the last couple of years of her life but she could get around pretty well on her own. We didn't have to dress her or bathe her or feed her. We cooked for her but I bet she could have done that on her own. So anyway, 2 days in and I really enjoy my residents. Many of them don't speak much, if at all but I talk to them because I know they can understand me some of the time and sometimes I can get a smile out of them. I find my hours in the classroom pretty tolerable because it is practical and I'm learning so much.

Where do I go from here? Well, I will be looking for work once I get my certificate and will most likely end up at a skilled nursing facility. My days at the nursing home are filled with feeding, giving bed baths, changing and cleaning residents, using lifts to get them out of bed and transferred to a wheelchair and dealing with dementia and depression. And while that is going on I'd like to start taking a bunch of science classes I need before I can apply to get into nursing school. That could take me a couple of years which is why I wanted to go ahead with my cna program. I've had this burning need to start helping people and couldn't wait to get started. It's hard work especially for someone like me who likes to be good at something immediately. Giving a bed bath (quickly) and taking care of multiple residents (in a timely fashion) is going to take lots of practice. But it sure is rewarding.

Tuesday, November 2, 2010

making strides, san francisco style

Giant trees, dancing lions, bison, ocean waves breaking and lots of pink men and women walking. Hmm...must be in san francisco golden gate park for the 2010 American Cancer Society Making Strides Against Breast Cancer event! DW and I were excited to be a part of the walk this year. After all, our good friend has worked for acs for years and works very hard on the northern california strides walks. I had the chance to volunteer last friday and help set up in the rain with my friend and dozens of acs workers, getting everything prepared for the walk on saturday. Banners were hung, tables decorated in pink and white, signs readied for placement along the route, thousands of tees folded in the gift shop tent, intermittent music played as the sound people worked on the stage area, port-o-potties stocked. A lot of time and effort go into these events pretty much year round. Marketing/advertising, logistics, coordination and the works. The payoff is the massive amount of money raised for research, programs and outreach. Over $574,000 has been raised so far from the bay area walks alone.

video
staying alive
Saturday came and went without the promised rain! DW and I joined 20,000 other walkers and enjoyed a 5 mile walk in a beautiful park setting, passing cheerleaders, the ocean, windmills and bison along the way. We got to the park just after the ceremonial kickoff so missed the rah-rah speeches but did get to see the lions (sorry don't know the name of the group performing) which are one of my favorite things! 20,000 is a ton of people but the venue is large and the start is rolling so for the claustrophobic, be unafraid. Also happy to report that traffic, parking and toilets were not a problem at all which is uncommon for an event this size. Since we missed the "official" start we took our time looking around at all the booths and also bought some t-shirts and other pink stuff.  I think I am really getting used to this cancer and brca thing because I was not emotional at all, just out for a fun walk in the park, even as I wrote down names of loved ones and decided who I was walking for. Since this was a breast cancer specific walk, decided to just put my family's names down that had bc and since my sticker read "making strides for" decided to just put down the ones still alive, since it's too late to make strides for the dead. At this point, I realized that everyone who is still alive from cancer (except for one, non-blood aunt) survived breast cancer. I know bc still kills many people, but in my family it has actually killed none. I don't know if that is because of the type we get, or if it has been caught early or because almost everyone had a mastectomy, but we get lucky when it comes to the boob cancer! Here are the numbers of birthdays we have celebrated post treatment: wt 0 (pbm), me 1(lumpectomy), sis-in-law 5 (lumpectomy), dad 10 (mastectomy), aunt 35+ (double mastectomy). Those are impressive numbers also considering my grandfather survived 10 years and an aunt around 30 after their mastectomies before dying of other cancers. Well that's a lot of damn breast cancer, you must be thinking...I surely must have been fearful of my own risk! Well, no call me stupid but I just did not know. So you see there is still a great need for education about risks. And while this walk had some great signs around the course reminding people about the importance of mammos, etc I would love to see more info about hereditary cancer. This would be the perfect audience to preach to since many of us are there in honor of family members. Having been to events by komen, livestrong and acs, I wish this was a banner or sign for all to see:
If you or any family member has had:
ovarian or fallopian tube cancer at any age 
breast cancer at age 50 or younger
breast cancer in both breasts at any age
both breast and ovarian cancer 
male breast cancer
If more than one family member on the same side of the family has had any of these cancers:
breast cancer 
ovarian or fallopian tube cancer 
prostate cancer
pancreatic cancer
See a genetics expert or talk to your doctor

How the American Cancer Society can help you: they offer many services for those affected by cancer. In addition to the $130 million they spend each year on research for cures, they provide a website full of info on all kinds of cancers and their causes, treatments, risk factors, statistics, preventions and new findings. They also are available by phone, 1-800-227-2345, 24 hours a day to help you with any questions you might have or just to be there if you need a shoulder to cry on. They also offer many services for patients that need help during and after treatment, such as offering rides to treatments, help with lodging if you have to travel for treatment and a variety of support groups. I mostly use their website to look up specific cancers that run in my family and figure out what the symptoms are and risk factors and any screening that can be done.

Oddly enough, acs was actually the one to tell me I had cancer. When I had my biopsy, the radiologist called me and told me that they found dcis and I would need to see a breast surgeon to have it removed. When I saw the breast surgeon, she also referred to it as dcis. So after my two surgeries to remove the dcis, I had been on the computer trying to learn more and I was just confused. DCIS is often referred to as a pre-cancer. At this point I was not sure if I had cancer and was a little embarrassed to ask my doc if I did or not.  So this is the question I emailed acs with: I recently underwent a lumpectomy for stage 0 noninvasive DCIS. I know they call this a pre-cancer. Does that mean I did not have cancer? Everyone thinks I had breast cancer and I don't really know what to call it. And this was their answer: Regarding your question, ductal carcinoma in situ (DCIS) is a type of non-invasive breast cancer.  DCIS mean that the cancer cells are inside the ducts but have not spread through the walls of the ducts into the surrounding breast tissue. So almost a month and a half after I was given my diagnosis, I actually knew what the hell it was. My next stupid question is "so am I cured?" None of my doctors ever mention remission but I think that doesn't apply to me because my cancer was noninvasive. I like to tell people that I used to have cancer. Let's hope my brca mutation doesn't fuck that up.

Wednesday, October 20, 2010

the value of a second opinion

I hate to put it out here because I know most of my readers can relate to what this poor woman must be going through. It breaks my heart and makes me just sick. I heard a true story of a woman that went in for a breast biopsy and was given a diagnosis of cancer. Not sure what the exact diagnosis was, or if she was brca+, but it must have been serious since she elected to have a bilateral mastectomy. Now when they remove your breast tissue, it gets sliced and diced and every little piece gets looked at for cancer. This is when they realized a mistake was made. Because they did not find ANY cancer in her tissue in either breast. Turns out they put her name on the wrong tissue sample at the time of her biopsy. I'm not sure a second opinion would have even helped her because normally that would have just been a case of sending that same mislabeled tissue to another pathologist. One can only hope that the other woman whose tissue was also mislabeled has been found and that the whole lab is getting a shake down to fix the broken processes. I am not a litigious person but this just cries out sue, sue, sue. Really though, can any amount of money give this woman back what she lost? Maybe she is more forgiving than I and is simply happy that she did not have cancer.

I did not seek any second opinion on my biopsy results nor did I meet with more than one breast surgeon before my lumpectomy. Everything turned out ok in my case. I can understand why people don't seek multiple opinions. For one thing, when this is all new to you it is overwhelming and you tend to trust what they are telling you. Maybe you never heard of a radiologist or pathologist before and surely they have much more cancer experience than you do so you just go with what they say. It is also expensive to shop around for docs even if everything is covered by insurance, you still have to pay that office visit copay. Sometimes you can't even get a second opinion as is the case with testing for the brca mutation. Currently one company holds the patent on brca gene testing. This is troubling for people who want to double check the test results before making such tough decisions as removing body parts. As someone who did have breast cancer and such a history of it in my family, I would have been more surprised if my test came back negative and probably would have wanted to send my blood to another lab just to make sure. And while I am more than happy to believe that my little sisters' tests did come back negative I still can't figure out how the lab processed their blood so quickly. I think they found out two days after the blood was drawn and sent from ny to ut. Is that even enough time to get the package off the truck and into the lab, let alone run the test and call their genetic counselor? Don't forget they usually call your insurance company first to make sure they will pick up the $3000 tab before they even start running the test. All this was accomplished during the week of christmas which is a barely functional week at most u.s. companies!

One second opinion I did get ended up saving my butt. With my family history in hand, I went to my primary doc and asked her what else I should be doing to keep myself healthy and we determined that I should get a colonoscopy. Despite the fact that all the guidelines said I didn't need one until I was 50, we added up all the questionable risks (diabetes, brca, half-uncle with colon cancer) and decided to get me to a gi doctor who pulled a precancerous polyp out of me. Whew is all I can say!

Friday, October 8, 2010

it's boob awareness month

Turned on a football game over the weekend and had to smile at all the nfl guys wearing pink for breast cancer awareness. It's october already which means that it is boob awareness month. I like math so of course I started crunching some numbers in my head. If the meadowlands, which holds 82,500 fans, were filled with average-risk women then about 10,300 of those women will get breast cancer in their lives (and 1,237 will get ovarian cancer). Let's say it were filled with brca+ women, then 41,250 to 70,125 women in the stands will end up with breast cancer (and 8,250 to 41,250 with ovarian cancer).

I think I feel a little more comfortable this october seeing all the breast cancer stuff out there. Maybe because it seems like we are making strides this year. Many new findings have come out recently that give me hope that things are getting better and we are coming closer to understanding the mutations. The more we understand about how a mutation works, the closer we get to finding a way to stop it. Recently they have been able to isolate the brca2 protein and they may have found a way to repair the brca1 mutation.

What do you think of when you see all the pink breast cancer stuff in the stores? Before I was diagnosed with bc I would see the pink stuff and think of my sis-in-law, the one who survived breast cancer. I would think about getting her something pink and cute because after all, don't all bc survivors need another pink thing to make them feel good or special? In fact, when I bought a new mattress one year (must have been in october) I received a pink sheep which I did send to her! I feel a little stupid now:) Yes, it is good that breast cancer is getting so much attention and some of that pink money must (I hope) trickle down to cancer research or cancer programs but I think we are forgetting the big picture. BOOB AWARENESS! I'm obviously aware of my boobs, are you? I mean, are you aware of your boobs?! I talk about mine all the time and now even think about them in the most random situations. I had to stop at the nevada/cali border for an agriculture check point on my drive here and open up my trailer. The guy told me to only open it a couple of inches otherwise I wouldn't be able to shut it again. He peeked under a one inch opening and said I could go even though he couldn't really see into the trailer. Same thing happened to dw on her drive here. My first thought was why do they bother making us open it a little and pretend they can see in? It's like having a mammogram but not having anyone read the film. Then I got to cali and we pulled our king mattress out of storage. I wanted to vacuum it but it is so large I didn't really know how to tackle the job until it dawned on me to break it down into quadrants as if I was performing a self breast exam. Do any of you (non-brca+) even do self-breast exams? Do any of you go and get your mammo every year? Do you all know what your family history is? When you see the pink stuff this year, please reach for your boobs and cop a feel (but try not to get arrested). And no, you don't need to send me any pink stuff unless it's really, really cool!

Tuesday, October 5, 2010

I left my heart (and part of my boob) in salt lake city

It's official. I've left utah behind and am now residing in california. I've rejoined my wife after 6 months weeks apart and while it is so good to see her again I'm going through an adjustment period. It's to be expected and I just need to roll with it. Living with the in-laws until I can find a job and we can afford our own place. Our pets and their pets learning to get along under the same roof. Trading mountain views for views of palm trees. I haven't even seen the bay yet as we are out in the burbs (I'm going to have to do something about that this weekend)!

It's funny how much difference a year can make. I know I say that all the time but it's so true. Last october I put a poll up on this blog asking you all to vote on where we should move next. I was so ready to leave utah. Now we have moved but I will miss it dearly. Two years ago as we left ny and headed to utah, I was so excited. So much beauty and so many places to explore in utah, not to mention the snowboarding! And we had an awesome first 8 months before cancer and brca entered our lives. The rest of that story is written here in the many pages of this blog. Somewhere between last october and this october I changed my mind about leaving. Somehow between my bcsw, snowboarding and working in the gardens I was healed. I got broken in utah but I got fixed there too.

So I'm back in cali and I expect to hear the typical utahn jokes when people find out I lived there. You know the dumb ones about how many wives I have, etc. And I expect to hear a little hatred because of prop 8 and current talk by some church leaders. When I hear people saying bad stuff about mutant 2 the kid in me wants to strike back or curl up in pain but the adult in me tries to remember what I've learned over the years: that is that you shouldn't judge the individuals of a group by what its leaders say. I mean, I grew up catholic and my pope doesn't like me but I know for a fact that many catholics do not believe in everything the pope dictates. And I assume that the same goes for the lds. I've had the pleasure of making the acquaintance of several lds and I like them and I hope they like me too. We don't have to agree on everything and believe in all the same things to get along. A little respect goes a long way and I just wish Packer had worded his speech a little kinder. If you've never been to utah, please don't be afraid to go there. It's a beautiful place and the people are pretty nice.
video

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.

Wednesday, August 11, 2010

a good test of my endurance

Saw my breast doc today. I have been avoiding her for a few months since I needed a little doc hiatus after my last surgery. My boob has changed a lot since I saw her in january. I still have some hard spots in it and some bruising but happily some of the hardness has gone away, especially under the nipple. I confess I haven't been feeling myself up lately, partly because my hands hurt and partly because I no longer have surgery on the table so I am not panicked that I will never feel them again. So as she is examining my bad boob, I can tell she is lingering longer than usual. I feel like saying, "step away from the boob and stop worrying." She tells me she feels something in there that she doesn't remember feeling before. I wonder how she remembers what my boob feels like. Does she take really detailed notes or is my fabulous boob engraved in her mind? She goes on to say that it could just be that the tissue around that spot may have softened but that spot stayed hard. Or it could be fibrous tissue. It doesn't feel gritty, the skin isn't stuck and it doesn't appear to be rooted. All good signs. Of course, because of brca, she says we have to check out anything unusual. She says that it worries her a little but not a lot because I am due for my mri next month and we can wait until then. Unless I would like to do an ultrasound this month (which isn't as sensitive a test). I just laugh and say that I had hoped to put off my mri for 6 months and get on the rotating mammo/mri schedule instead of doing them so close together.  She wants me to promise her that I'll go and get one this fall. I don't say anything but think to myself, I'm moving at the end of September and then I'll need to find a doc and get a referral and then schedule the mri which could in itself take a couple of months. No way that is going to happen right away. We are moving back to cali. DW will go this weekend and I will follow later. I will probably be off my cobra insurance come september and on new insurance but I won't be able to use that insurance here in utah so any treatment or tests will have to wait until I move. Doc goes on to say that she worries about me. I say, "don't worry about me." I think to myself don't worry about me, I have lived a wonderful life. I never thought I would live this long so I did my bucket list in my 20's and when I kept on living after my 30th birthday my bucket kept flowing. Besides, no one in my family has ever died from breast cancer. We must get the good kind.  She says I know you will be ok and the survival rate is the same without surgery. She mentions an ultrasound again but I say no because I figure that will come back inconclusive like wt's did and then they will want to biopsy me. Forget that, I will wait for the mri which doc says does a much better job. I say if something is wrong then why did I just pass my mammo? She says the mammo can miss about 10% of cancers especially in dense breasts like mine. I don't feel worried though because a mammo caught mine in the first place. We say goodbye and I thank her for all her help over this last year. She tells me that I can always call her from cali with any questions. I love her and I'm going to miss her.

So I am on the surveillance track right now. I have decided not to cut the bitches off, at least for now. I have been known to change my mind! This spot I have to pay attention to will be a good test of how well I can handle the strain of surveillance. It will be interesting to see how I will feel if I do end up needing a biopsy. What will actually push me over the edge and onto the table? It reminds me of some baby swallow we have been watching at the garden. Yesterday, they finally took the plunge out of the nest. One little lonely bird sat at the edge of the nest all day by itself because I guess it was too afraid to take it's first flight. Finally, when someone took a picture of it, it flew off. Perhaps scared more by the camera than by  the thought of falling out of the sky.

I'm feeling stubborn today and got home and was like no way I'm gonna go get that mri soon. But then mutant 1 reminded me that I'm gonna need new drugs pretty soon after I get to cali. And I'll need to get a doc to sign off on my new driver's license most likely. So guess I will see if my old doc there will take me back. Once my new insurance kicks in I guess I will call from utah and set up an appt and maybe see if I can get a referral via phone so I can make the mri appt in advance as well. Mutant 1 saves the day once again.

Wednesday, August 4, 2010

a view to die for

Angel's Landing:we made it over but now we have to cross back
July 31, 2010 did not go the way we had planned. We were supposed to be backpacking in the narrows at zion national park but the weather was calling for a chance of heavy rain and high risk of flash floods. We all agreed that we did not feel comfortable risking our lives in a narrow canyon with walls up to 1000 feet on either side of us. We actually made that decision the night before when the risk was only moderate with a substantial potential of flash floods. We were all a little disappointed because we were really looking forward to it but we knew the weather is tricky at this time of the year. In any case, anything is better than what I did a year ago on the 31st: my lumpectomy reexcision that had me crying on the operating table because they couldn't get the i.v. in me to put me to sleep fast enough.

view of the ridge from scout's landing
dw crosses the ridge
So instead we decided to hike angels landing. This is a hike that I have never wanted to do. In fact, I have stated repeatedly that I would never do this hike. It involves hiking up a steep, mostly paved path until you reach a gnarly, rocky section with chains to assist you along a very narrow path about 1000 feet up from the valley floor. DW insisted that she wanted to do this hike if we were not able to do the narrows. I insisted that she would be doing it without me and that I did not even want to be around to watch her do it because it scared the shit out of me to even think about it. But I knew she had her heart set on it so I looked up some footage on youtube. I found a video of a guy that was wheelchair bound and was just getting well enough to get out on the trails again and did this hike with the help of his family and friends. I was so impressed with his bravery and determination that I decided that I could at least hike up to scout's landing (the part before the really scary part) and turn around if I didn't want to finish it. Once I got up there and looked across the ridge I thought it was crazy to continue. But once you are on the path and don't look down or ahead, and just concentrate on the ground beneath your feet and the chains or rocks in your hands, it was a little less intimidating. Of course that takes some of the joy out of hiking for me, if you can't really appreciate the view because it scares the shit out of you! There was an aussie behind us that was talking with us and trying to convince himself to go to the top. He asked my brother (who had made 2 previous summits) if it was worth it. My brother just said ummm... so the aussie was like well, you just talked me out of it! My brother actually decided not to summit and waited for us instead. So we took off and after a little bit the aussie followed, I guess inspired by us brave chicks. In the beginning, I just kept thinking that any little mistake could kill me. Any slip or stumble could send you over the edge. I quickly flushed those thoughts from my head, thinking duh, of course I would die if I fell but I can't let those thoughts even enter my head. So I concentrated instead on each foothold and handhold. There are chains much of the way in which you can grab if you are feeling vulnerable. I was feeling pretty good until dw said watch out for that rock, it's slippery. She had actually slipped a bit on it but had a good grip with her other foot and both hands. Thank god I didn't know she had slipped until we were done. It may have freaked me out. We made it across the ridge and to the top which was the widest part of the whole trail. Everyone was all smiles and taking photos for each other and congratulating one another. It was a bonding experience and one which required some teamwork. There isn't enough room on the ridge for people to cross paths so one must step aside to let the other through. However, there isn't much room to step aside so you would ask this stranger on the trail if they had a secure hold and if you were ok to go past them. One of my worries was that someone coming down the trail would fall and knock me off the rock. Luckily, we had started early and missed most of the crowds.
first set of chains before the gnarly section


After we had completed the ridge, dw and I discussed whether we would do it again and we both said maybe, if someone we were with really wanted to do it. I even told another hiker that hadn't gone yet that it wasn't so bad. I also felt that my surgeries were scarier than this hike, a hike in which at least 9 people have fallen to their deaths. But after sleeping on it a couple of nights, both dw and I admitted that we were crazy to have done this and would probably never do it again! Frankly, I don't think it's worth the risk and you can get the same view, if not better, from the observation point hike and a lot less chance of death.

Speaking of risks, I will see my breast doc next week to discuss my options on keeping my breasts. I've managed to give her the slip for the last 7 months. Last she knew, I was hell bent for more surgery. But now I would rather keep the boobs and do surveillance. So got a voicemail from her office today asking if I had scheduled my bilateral mastectomy yet and if not, please come in for a followup. Jesus Christ! Yes I have uttered those words before but it was a bit of a shock to hear it on my voicemail. Like getting a message from dw to pick up milk and bread on the way home and might as well get a bilateral mastectomy while I'm at the store!

Thursday, July 22, 2010

hell yeah, life is awesome!

Got a letter in the mail today from my hospital. Figured it was either a bill or results from my mammogram that I had on monday. It was my results. I passed my mammo! I opened it up as I was walking my dog and tears of relief and joy ran down my face and I really didn't care who saw me crying. I am so happy! Yeah! I've been waiting for the dreaded phone call all week. The one where they tell you to come in so they can get another look at your boob because something weird is up. Not this time! No biopsy for me. Means that I can go ahead with my trip next weekend to the narrows. A biopsy would have kept me out of the water for two weeks. No lumpectomy or mastectomy in my near future means I can keep on working at the coolest job in the world! After my seasonal, incredibly boring (but much appreciated) job with the state ended I picked up a summer job at the garden I have been volunteering at. I get to be outside all day, taking care of beautiful flowers and working with great people, and I get paid for it! Life cannot get much better than this. Even though a week after I started working full time, my hands started bothering me in a kind of carpal tunnel way and I can't make a fist in the morning, I don't care. It has kept me off my bike but that is just temporary. I go to physical therapy on my day off and it is getting me through the week. This job is so mentally worth it. I smile all day long, even though it has hit 100 a couple of times it doesn't bother me. Every day at least one visitor thanks us for a job well done. Little kids run around (I work in the children's section) and scream, "hey you guys you gotta check this out!" or "I love this place!" Mothers bring their children and remark on how it is so much less chaotic than taking them to the zoo. And I have to brag, our children's section is so cool even adults like it. We have one volunteer that works here every day. He says the people are great and it is cheaper than therapy. I have to agree with him. I haven't even thought about going to therapy since I started here full time. This is therapy. I come home exhausted every night but happy and satisfied and filthy! I love getting dirty. I kind of look like pig pen by the time the day is over. I feel like a kid again (except for my aching bones)!

The one funny (odd, ironic) thing about my job is that it sits right above myriad, the place where our brca tests go to and the place that has a patent on our genes. So some mornings, when I get to work before the gate has been unlocked, I sit and wait in my truck, the one with a f*ck brca sticker on it, and watch all the people piling into the myriad lot on their way to work. One can never really get away from the frickin brca reminders! It's everywhere. But it ain't bothering me today.

Monday, July 12, 2010

nip it in the bud

Thought I'd blog about colon cancer today since they have billboards all over utah at the moment reminding you to go in for screening if you are 50 or over. I, of course, am not over 50 but luckily did get a screening done last november and possibly saved my life. Who should get a colonoscopy? EVERYONE age 50 or over. People who may need one sooner and should discuss it with their doctor include type 2 diabetics, smokers, brca1 mutants, possibly brca2 mutants, those with a strong family history, those who don't exercise much or don't get enough fiber in their diets, those who have had inflammatory bowel diseases, like ulcerative colitis and Crohn's disease, those who consume large amounts of alcohol and those with symptoms.

Most people do not have symptoms of colon cancer in the early stages, but here are some things to look for as advised by the american cancer society:

Signs and symptoms of colorectal cancer

Colorectal cancer may cause one or more of the symptoms below. If you have any of the following you should see your doctor:
  • A change in bowel habits, such as diarrhea, constipation, or narrowing of the stool, that lasts for more than a few days
  • A feeling that you need to have a bowel movement that is not relieved by doing so
  • Rectal bleeding, dark stools, or blood in the stool (often, though, the stool will look normal)
  • Cramping or abdominal (stomach area) pain
  • Weakness and fatigue
  • Unintended weight loss
Most of these symptoms are more likely to be caused by conditions other than colorectal cancer, such as infection, hemorrhoids, or inflammatory bowel disease. Still, if you have any of these problems, it's important to see your doctor right away so the cause can be found and treated, if needed.

Of course most of the symptoms could mean anything! If you want a fun way to track your poo try this iphone app, poo log by Josh Richman & Anish Sheth MD, authors of "What's Your Poo Telling You?"

As for the actual colonoscopy, it was not bad. In and out in less than two hours (from waiting room to recovery and that included removing my polyps). I did need a person to drive me because I opted to be put asleep (wasn't anesthesia though). If you ask around, you should be able to find someone willing to leave you conscious for the procedure but you will be given something so you are not in any pain (as seen on the Katie Couric link on the left).

The fast and shit the day before is probably the worst thing of the whole procedure but is not as bad as I thought. I love food and couldn't imagine going an entire day without eating. I was allowed to drink clear fluids, eat jello and drink broth, so at least I didn't feel like I was starving. As for the toilet, stay close as the day goes on and have a good book nearby:)

Some people may be short on cash or lacking insurance. If that is the case, a lot of states have programs available for free screening. Here is a link for help in utah. Google your state and  "free cancer screenings" to find help in your area.

Chances are if you are reading this and don't think you fit the bill for early screening, someone you know is probably over 50. Next time you talk to your parents, aunts, uncles, older cousins go ahead and ask them if they've been screened. You need to know their history anyway. And a reminder to my siblings reading this: you need early screening due to my polyps.

I've been told by someone that they are not going to bother with any type of screening because death is a natural process and they are not afraid. Well, I guess I wouldn't be as afraid if I thought I could go to bed one night feeling good and just not wake up. But death is not usually kind. My uncle died a painful, early death from colon cancer. Sometimes life is not kind either. I would gladly go through a day of the fast and shit and colonoscopy to avoid wearing a poop bag the rest of my life. Just my personal opinion...

On a happier note, fatty is taking pre-orders for his 2011 cycling gear now through next monday! Twin Six and fatty are donating part of the proceeds to livestrong. If you wear bike clothes check it out. And he has some cool hoodies for the low price of $30. If you are in the need for some new duds or even new water bottles, order now and help raise money for livestrong.

Wednesday, July 7, 2010

vote for FORCE: part 2

I posted recently about how you can help the brca community (my peeps) raise money by voting on facebook. Time is counting down for the Chase Community Giving Campaign.  If you are on facebook and haven't voted yet, please consider doing so. Here is a link to a radio clip about brca, FORCE and the Chase Community Giving Campaign by Teri Smieja on IROCK 102.7. 

Here is a link to Teri's blog, Teri's Blip in the Universe. She is becoming quite the celebrity so check out her blog if you haven't already!

And here is a link for voting for FORCE. Thanks everyone:)


T

Tuesday, June 29, 2010

letting go, moving on

I think (hope) I have finally reached the point of letting go of my self-pity and just getting on with things. By 'things' I mean mental things. I have been moving on with my life but still was kind of stuck in a rut of 'woe is me' even while I realized that others do have it worse than me. Not to belittle brca, but it is not the end of the world - that is, I won't let it be the end of my world. That being said, I'm kind of over talking about my life and my brca journey. I'm not really doing anything at the moment, other than surveillance (depending on my upcoming mammo and dr visit). And wt is doing well and healing and just about all filled up and waiting for her exchange. So I don't have much to share anymore, brca wise. I will probably continue to blog, but may try and change it up a bit and maybe focus on groups/people/organizations that are helping the cause.

It has been a year now since I flunked my first mammo. Almost a year since I found out I had cancer and almost a year since I first heard that four-letter word, brca. I've grown a lot in that year: learned a lot, cried a lot and changed a lot. It is time for me to shift my focus elsewhere and to shove brca to the back of my brain and only bring it out for dr appointments, breast exams, etc. Ha, ha! That won't likely happen but you get my point. I'm done moping and feeling bad. I'm ready to let go. So what if I might have to cut the bitches off eventually. I will get over it.

I just realized the other day that on my one year anniversary of my lumpectomy-reexcision surgery, I will be backpacking the zion narrows! How awesome is that! I've been wanting to do that ever since the day hike I did in the narrows several years ago. So you see, there is life after brca and it is great:)

Wednesday, June 23, 2010

blog roll

If you haven't noticed, my blog list (on the left side of my page) contains some recent additions. Please let me know if you have a blog you'd like me to add.  One blog that I added combines my new love, biking, with the whole reason my blog started, cancer. The Fat Cyclist blogs about his love of biking and also raises a ton of money for cancer through his blog. His writing is very entertaining and humorous and he is one of the top followed biking blogs in the states. I have pasted an article about him below and just want to add a disclaimer that his wife's story did not have a happy ending. Fatty continues to blog, raise money for cancer, and get out and ride his bike and enjoy life.

Susan Nelson lives strong while Fat Cyclist husband raises money for Lance Armstrong Foundation

Susan Nelson lives strong while Fat Cyclist husband raises money for Lance Armstrong Foundation

July 14, 1:18 PMMichigan Mountain Biking ExaminerDiane Ursu
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In May 2008, Elden found this photo of Lance Armstrong in his email.
It started out as a simple blog about a "fat" mountain biker and progressed to a powerhouse for raising money for the fight against cancer.  Elden Nelson is a witty mountain biker who thousands of Internet surfers consider to be a friend.  They read his blog every day to enjoy his funny stories and unique viewpoint. They also keep coming back to see how his wife, Susan, is doing.
Win Susan!
"Win Susan!" is a phrase that is found throughout pages and pages of comments on the Fat Cyclist blog. Elden's readers have joined together to offer whatever support they can, whether it be spiritually or financially. 
Susan first found a breast lump around Christmas of 2003. She underwent a mastectomy and chemotherapy. She got well and began working out to gain strength until she started experiencing hip pain. After treating it like a sports injury, she went to the doctor to find that her cancer had metastasized throughout her body. In 2008, tumors were found in Susan's brain after she had lost her ability to fall asleep.
Fat Cyclist readers have journeyed with Elden and Susan during her chemotherapy and radiation treatments. They eagerly read with hope and pray for strength for the couple. Kleenex boxes sit by computers worldwide as readers share in the joy and sadness of the Nelsons' life.  They are also awestruck by the strength and courage of Susan.
While Susan's prognosis is undesirable, she continues to live life to the fullest extent that her body will allow. When she is able, she draws with her children and writes. She enjoys making jewelry, an art she can no longer practice on a regular basis, and created some pieces for a fundraiser for the fight against cancer.

Elden Nelson, aka "Fatty."
Be strong, Elden
What is particularly amazing about Susan's story is that it is told by her husband, Elden, who is affectionately known as "Fatty" by his readers. Elden's purpose has been to do everything he possibly can to make life better for Susan. This is his struggle.
When Susan was first diagnosed, Elden searched for a new job with better benefits so they could better afford treatment. After moving several times, they bought a home in a Utah neighborhood so Susan could be closer to friends and family. As Susan's cancer progressed, Elden made changes to the home so she could move around easier. It became a constant fight for Elden to accommodate his wife. He simply wanted to make things better for her.
Elden couldn't do it alone, though. He expressed his frustration on his blog, and his readers responded with prayers and advice. One of the greatest pieces of advice that was echoed throughout the comments was to keep riding. In order for Elden to take care of Susan, he had to take care of himself. He did not want to take away from his time with her, but mountain biking was therapy, and he knew he had to do it.
Fatty's fight against cancer
Fat Cyclist readers are quite acquainted with the "Win" Special Edition Fat Cyclist jersey, a jersey made by Twin Six with all proceeds going to the Lance Armstrong Foundation. Many of Fatty's lucky readers get to sport the fabulous jersey, and they wear it with pride. 
Twin Six has been quite supportive of Elden and Susan and has made a lot of Fat Cyclist gear. In the fall of 2008, Twin Six went beyond the standard jersey to provide long sleeve winter jerseys, bib shorts, and arm warmers. Twin Six's generosity went way beyond providing fundraising product for Fatty, though. In November of 2008, for one week, Twin Six donated half of the purchase price for every Twin Six jersey sold to assist with Elden and Susan's medical costs.
Livestrong Challenge
In January 2009, Elden took on a big project – one that may be much more successful than he had anticipated. He rallied the Fat Cyclist troops to form Team Fatty with members from all over the country. Team Fatty set out to win the Livestrong Challenge.
Tour of California. Fatty decided that Team Fatty just was not enough. In February, he live blogged during the Tour of California and had the fantastic idea of having Bob Roll, former pro cyclist and Versus cycling commentator, shave his head if $5,000 could be raised by the end of the Tour. Over $8,500 had been raised and Bob was clipped on television. Lance Armstrong was even present for the moment of truth. 
Team Fatty. Team Fatty continues to raise money for the Livestrong Challenge. Team Fatty raised the most money for both the Seattle and San Jose Livestrong Challenges. The Philly Livestrong Challenge will take place on August 23, 2009, and the Austin Livestrong Challenge will be held October 24-25, 2009.
As of July 14, 2009, Fatty's web site reports that $411,178 has been raised by Team Fatty. It is simply incredible how so many people came together to fight against cancer.

Elden and Susan celebrated their 20th anniversary on
August 13, 2008.  Elden posted this picture with a single
sentence
:  "With the right woman, 20 years doesn't feel like very
long at all."
A story of love and dedication
Elden and Susan celebrated their 20th anniversary on August 13, 2008. Twenty years is remarkable in and of itself, but it is even more amazing when faced with the challenges Elden and Susan have had to endure.
They are remarkable people. They have brought thousands of people together to fight a great cause. They bring joy and humor to the lives of Fat Cyclist readers. They also bring hope that love is real, and that is evidenced by Elden's devotion to Susan in her struggle with cancer.
They are like anyone else, however. They are raising four children – two sons and identical twin girls. He works to provide for his family. She is writing a novel. He rides bikes. What sets them apart is that they allowed themselves to rise above their challenge in life, and they inspire many others to do the same.
 For more info:  Fat Cyclist