Wednesday, March 31, 2010

the new health care plan

I'm very excited to see what this new health care plan brings. Not really sure how everything will play out and what it really means but it does seem to offer some hope. I've been well aware of 'pre-existing' conditions for many years but only recently learned  that the insurance companies place a life-time limit on how much they will cover you for. This worries me of course because I've racked up plenty of bills over the years and will continue to do so until the day I die and most of my life I've been on some sort of blue cross blue shield plan. Below is an email I received from livestrong about the new plan. I hope it turns out to be  everything a mutant (and everyone else) could ask for!

Why it matters...

Dear Janine,

Top 5 healthcare
It was a long and difficult debate. We didn't always agree on every detail. But we came together around the principle that discrimination against cancer survivors must end. This week, after many years of failed attempts, the President has finally signed into law a reform bill that will balance the scales and give those of us affected by cancer a fair shake when it comes to health care reform.
Do we agree with every provision? No. Did we fight for more in some places and less in others? Yes. But at the end of the day, I'm proud to say this bill will have an enormous positive impact on the lives of cancer survivors.
To drive this point home, our team drafted a list of the five elements of health care reform we can all be excited about that are now the law of the land. Will you take a quick look at the Survivor's Top Five below and share it with your friends and family? It's important that we all know what's in this critical new law:
Survivor's Top Five—Health Care Reform
  1. "Pre-existing" conditions are history. As soon as this year for kids, and for all individuals by 2014, no insurance plan can deny you because you're fighting cancer or any other illness.
  2. You can't lose your insurance when you need it most. Within six months, no person can be dropped from their insurance plan when they receive a diagnosis of cancer or any other disease.
  3. An end to "lifetime caps" on your benefits. You won't have to worry about your benefits "running out" as you're fighting to take care of yourself or a family member.
  4. More coverage for young adults. Beginning in six months, you can stay on your parents' coverage up to the age of 26.
  5. Support for clinical trials. By 2014, the law will prohibit new health plans from dropping or limiting coverage just because an individual is enrolled in a clinical trial.
Passage of this bill is historic, but just the beginning. We're going to continue our work as this law is implemented to push for policies that reduce the prevalence of cancer and support survivors. It's not always easy or neat, but it's important work. And with your help—like the more than 100,000 of you who supported our campaigns on health reform—we'll keep pushing for victories that lead us to a world without cancer.
Thank you and LIVESTRONG,
Doug Ulman, President and CEO, and the LIVESTRONG Action Team

Saturday, March 27, 2010

I am back! (fuck you brca)

I had such a great day today! Went snowboarding for the first time in about 8 weeks. I am about 7 1/2 weeks out from surgery and have been itching to go. I decided not to try it last weekend, even though our friend was here and went last saturday and sunday with dw. I had to take it easy for a little while because I had some bleeding but I did well the last two weeks and started back at the gym. Did a little weight lifting without any problems and just had to get out on the slopes today because the weather is great and the ski areas will be closing soon. My main concern was that snowboarding would be too hard on my abs since I've spent all this time trying not to use them. But right from the first run, I could hardly tell anything was different. My next concern was that my legs would crap out since I haven't done anything harder than walking on the treadmill for two months now. Much to my delight, I tore it up just as well as before surgery! Kept up with my brother and dw all day and hit the showers just one run before them. I thought I would have to take it easy and just enjoy the weather and the chance to snowboard again and be happy with that but it was so uplifting to find out that I haven't lost all my muscle and stamina that I've worked so hard these past several months to get. I've been a little frustrated not being able to do everything that I'd like to and knowing that I have more surgery ahead of me and more damn recovery time. I'm ready to be done and make some fun plans for the summer and get on with my life. So anyway, today felt really good.

It's been a great weekend all around. March madness is going on here in salt lake and my favorite team, the sryacuse orange (formerly orangemen) were here. Decided to go over to the arena after work thursday and try and get some cheap tickets. Talked a guy down from $100 to $50 for two tickets in the nosebleeds. Well, I didn't really talk him down, I just walked away and told him I couldn't pay that much. I told him I only had $60 but he must not have heard me cuz he said he would take $50. The face value was $85 for each ticket so we made out well and got to see butler vs syracuse and kansas state vs xavier. Syracuse ended up losing but we still had a great time and the loss didn't bother me as much as it has in the past. I guess I've learned that there are worse things that could happen. And there's always next year! I fell in love with the orange 25 years ago when I was first diagnosed with diabetes and ended up in the hospital for a week in the middle of march. Basketball was on night and day and although I played on my high school basketball team, I had never really watched it before so I learned a lot that week! I love cuse's run and gun style of play and all the dunks and alley-oops.

Received some great news on thursday from wondertwin. She had a biopsy this week on a questionable spot that turned up on her mri and subsequent ultrasound. 2 out of 3 people weren't worried about it but because of her brca status, they did the biopsy. Turns out it was just some fatty fibroid tissue. So now she has a bruised breast but peace of mind and is back on track for trying to schedule her pbm. A couple of weeks ago she got her first tattoo. She was thinking of doing some sort of med id tattoo for diabetes but came up with a really cool idea and twist on the standard symbol.
Here she is beating the shit out of the pink brca snake and fending off the blue diabetic snake. Go wondertwin!

Wednesday, March 17, 2010

shout-outs

Got a lot of people on my mind lately so I thought I'd give them all a shout-out:

-first off to my little sis: happy birthday!
-and happy birthday a day early to a friend of ours!
-happy birthday in a couple days to my dear mom, gone but never forgotten:)
-hi to a friend that is under bed rest for the next ten weeks:(  hang in there girl, hope it goes by fast
-shout-out to my dw who gets to keep her job and will soon be a federal employee. Love you, I know you were sort of hoping you could collect unemployment for awhile but thanks for working so hard!
-best wishes to a coworker of mine who had a questionable mammogram six months ago and has a follow up mammo this week. I know her mind is already gone to that dark place because she asked me about my surgeon and chemo (which I didn't need, thankfully)
-fingers crossed for someone near and dear to me that has to have a biopsy next week just as she was trying to get her pbm scheduled. 2 out of the 3 people that viewed the film said not to worry so hoping they are right. Hang in there girl and don't let the brca bastard get you down
-and to the rest of you, always thinking of you and hoping that everything is well and you are enjoying life

My hyst/ooph update six weeks out:
Had another follow up visit with my nurse practitioner last friday and given the ok to resume my normal activities. Even said I could give snowboarding a try as she tried to pantomime the movements, confessing that she never had been but imagined it would be a workout on my abs. So I did step up my workouts just a tiny bit and added the exercise bike on friday and just a little bit of lifting with my legs at the gym on saturday. Really didn't do too much and couldn't even feel it in my muscles afterward. Yet 24 hours later I started bleeding. I have been spotting just a tiny bit every day for the last couple of weeks but they expect some spotting as the stitches dissolve and everything looked good at my visits. I still had one more suture in me that hadn't dissolved as of last friday. I didn't even do anything on sunday except go out to eat and see a movie but late in the afternoon, just as I was about to go to costco, I noticed blood in the toilet and a little heavier than normal spotting. This made me a little nervous and I put on a maxi pad and waited a little to see what would happen. I didn't want to talk to the doctor because I didn't want to have to miss my first day at work on monday and wasn't sure what she would say. My post-op instructions say to call if I experience anything heavier than what the first day of your period would be like. I didn't bleed at all for almost the first three weeks so it did concern me a little but I decided to go shopping anyway and try and leave a message for my doc so that she would call me on monday (after I was at work). However, a live person answered the phone because the doc has an answering service. I wasn't prepared to talk to anyone so I said I had the wrong number and hung up! Did my shopping, came home and discovered I was still bleeding. Not what is considered heavy, which is saturating a pad in an hour or less. More like slow and steady so I fessed up to dw who scolded me for going shopping and called the answering service back and was paged through to my nurse practitioner. I was told to go on "pelvic rest" for the rest of the evening and call back in the morning, unless I didn't stop bleeding, in which case I would need to go to the emergency room. So stayed in bed for the rest of the night and didn't have any more bleeding by the morning. Now I am told to really take it easy this week and not even walk for very long. Good thing I am back at work and it is very sedentary. I only get up when I pretend I need to use the bathroom! On top of that I came down with a cold so I don't even feel like working out anyway. Guess I won't feel too bad when our friend gets here this weekend and she and dw go off skiing without me. Now pondering whether I will be able to handle a backpacking trip in about 30 days. Just don't know if I will be able to handle sleeping on the ground, carrying a 25-30 pound pack and hiking for about 10 miles a day. Guess I will have to play it by ear and see how the next couple of weeks go. Patience is not one of my virtues but it is something that I am learning.

Thursday, March 11, 2010

living with uncertainty

Things have been unsettled for awhile now for dw and I. Just before christmas, she found out her job was changing from a contract position to a federal position meaning at the very least, I would lose my health care benefits and even worse, she could lose her job. Now, three months later, we still don't know what is going to happen. She has heard through the grapevine that the army had to offer her job to a veteran since they base hiring on a point system and he has more points due to time served. DW is second on the list so if he declines the job then they will offer her the job. So today is the last day of her contract but no word yet. She will head to work on monday assuming that her job is still there, for now! This situation really distressed me back in december but kind of pushed itself to the back of my head after my breast surgery was cancelled. We have come up with a few plans depending on how things turn out and we're trying not to stress too hard because we have no control over how it plays out. The good news is that I am working again! I got a seasonal job that I had last year, so no benefits, but hopefully about 4 months of work. Still hoping to cut the bitches off sometime this year but can't say for sure when until dw's job situation is clear and I sure don't want to do it while I have a job! So when life gets hard for us we like to head to one of our favorite places in utah, moab. Below are some pics from canyonlands and arches. It was raining when we went to arches and we got to see the place like we've never seen it before, all covered in a fog. It was very cool and what we both imagine ireland must look like. Oh yeah, I'm feeling pretty good! Was able to do a couple of easy hikes last weekend and now at 5 weeks out, I forget to even look at my incisions because I just don't remember they are there. And by the way, I've been adding more blogs to my list on the left so take a look. And I added Jim's photo website under "websites I dig." Stumbled upon his site when I was looking for info on arches fiery furnace hike. He has lots of photo journals of cool hikes and lots of other types of pics such as eagles at farmington bay that I recently blogged about but his pics are so much better! He is an older guy that started hiking to improve his health after heart surgery, so check out his site if you're into nature pics or looking for a good place to hike in utah.


Thursday, March 4, 2010

time to do the kegels


Had to throw in this picture of the moon even though it has nothing to do with this post. It was prettier in person so just imagine this picture ten times better!

I had my 4 week post-operative check up the other day and everything looks good but I am still healing so I still have to take it kind of easy. Initially, I was told that I could return to my normal activities and the only restriction I had was to not insert anything into my vagina. But when I asked if that meant I could start weight lifting again and snowboarding I got a big no. Guess they don't consider those as "normal" activity. I am to go in again in two weeks to see if the stitches have done their job, but even if they have, they say I still have to be careful of getting a hernia. When I return to weightlifting I am supposed to start all over with low weights as if I am a beginner. I guess I have to build up my abdominal muscles again. Even though my abdomen wasn't cut open I have a few spots where the instruments were inserted. I don't know if they went through my muscle and now I have cuts that need to close up. I guess I'll ask them at my next appointment. I don't think my body is really ready for snowboarding anyway. I still haven't reached my pre-surgery speed on the treadmill which is a good sign that my body is still weak. 

I found out that I no longer have my cervix. I had thought that they were just taking out the ovaries, tubes and uterus. I never actually discussed my cervix with my doctor although I had meant too, but forgot. I kind of wanted to keep it because of the rumors floating around that sexual pleasure may be affected adversely. I have heard of many women that take out the uterus but leave the cervix. That involves leaving a little bit of the uterus in there as well so I guess when I told my doc to take out the uterus, she assumed I meant the whole thing and went ahead and took the cervix. So make sure you let your doctor know exactly what you want if you are considering this surgery! In retrospect, I am ok with getting rid of the cervix. I found out that if you do end up getting cervical cancer and you took out your uterus, the cancer is harder to treat because now it can spread right to your abdomen. My pathology came back with atypical cells on the cervix, some endometriosis and a fibroid in the uterus and a little junk on the ovaries but they tell me that none of that was too unusual. And everything was benign and it is all gone now so nothing to worry about.

menopause update: I learned that the flushed face that I've been experiencing is a hot flash. I thought a hot flash would be worse, and I guess it is for some people. I haven't been bothered at night with them, at least I don't think I have. Our apartment stays pretty warm in the winter. We don't even turn the heat on. So I do wake up during the night and have to kick the covers off but I remember doing this last winter too.

My brain has been a little fuzzy since surgery but it seems much clearer now, or so I thought. I woke up this morning and was in the bathroom when I noticed how well I could see without my glasses on. Turns out that I forgot to take my contacts off the night before. I've been wearing contacts for at least 25 years and even when I was falling down drunk in college I still managed to remember to take them off before bed. So I don't know if I'm suffering some brain loss from not having any estrogen. I also saw a friend over the weekend and was going to bring her something on Tuesday when I saw her again but it slipped my mind until today. And for the life of me I can't even remember what it was. That might not be unusual for some people but I have always been super good at remembering stuff like that. If I said I would lend someone a book or dvd, I would remember 99% of the time to bring it to them the next time I saw them. It could be the lack of estrogen or just the lack of stimulation since I sit around most of the day doing nothing. 

The most important thing I have discovered is that I can still function well in the sack:) Although I don't have the all clear to put things in my vagina, I have gotten the ok to have oral sex. My libido is just fine and I have not had any problems with vaginal dryness. As for my missing cervix, I don't think it will be an issue. My aftershocks were not as strong as usual but I was trying to take it easy on my abs and I'm sure I'm a little weak. I still have stitches along the top of my vagina. I am going to start doing kegels anyway just because it's a good idea as we get older. Kegels help strengthen the pelvic floor muscles and can help not only with urinary incontinence, but also with enhancing your orgasms. And something that I just learned today is that men can do kegels and get these same benefits! So here is some info on how to do a kegel that I have copy and pasted from http://www.ehow.com/how_5483159_benefit-exercises-strengthen-pubic-muscles.html 

By Hannah Rice Myers
eHow Contributing Writer

(1 Ratings)
Kegel exercises, named after Dr. Arnold Kegel, the gynecologist who invented them, have long been thought of as exercises for women. However they serve a purpose for men as well. The exercises, when performed correctly and practiced regularly, are an effective method for treating incontinence and improving sex lives.

    How Kegels Work

  1. Kegel exercises help to strengthen the pelvic floor muscle, also known as the pubococcygeus (PC) muscle. This is the muscle which supports the bladder and anus in both genders, as well as the vagina in women and urethra in men. For both men and women, strengthening this muscle can help treat and prevent urinary incontinence, while improving sexual performance.

    The PC muscle in men not only control the bladder but also the flow of semen. When practicing Kegels regularly, a man may notice an improvement in his ability to control ejaculations and firmer erections.

    Giving birth can cause the PC muscle in women to become weak, resulting in urinary incontinence and reduced sexual gratification. Performing Kegels will not only provide her with increased bladder control, but an increase in pelvic vascularity. This means there are more veins in the pelvic area, resulting in an increased blood flow to the vaginal region. Ultimately this leads to stronger orgasms and greater sexual satisfaction.
  2. Find Your PC Muscles

  3. Wait until you feel the need to urinate and then stop midstream. The muscle responsible for this is your PC muscle. Try doing this more than once to become familiar with its location and the feel of the muscle.

    For men, the next option is to lay on your back and insert your finger into your anus. You then contract your muscle as though you are attempting to prevent yourself from passing gas. The muscle you feel tightening around your finger is your PC muscle. Women can do the same, except you need to insert your finger into your vagina. The muscle you feel tighten is your PC muscle.

    The last option is for women only. Pretend there is a marble beneath you on the floor. Squat down as though you are going to pick it up using your vaginal muscle. The squeeze you feel will be the muscle you need to exercise using the Kegels.
  4. Begin Slowly

  5. Once you have located your PC muscle, begin exercising it slowly. Start by squeezing and holding it for a count of three, then relaxing for a count of three. Do this 10 to 15 times, which equals one set. Add another one or two to your count every other day or as you feel your muscle become stronger. Do this until you are squeezing and holding your muscle for a count of 10.
  6. Practice Regularly

  7. Consistency is the key to success with Kegel exercises. Finding the time to practice them should be a cinch since they can be done anywhere without anyone being the wiser. However, it may be helpful if you set specific times of the day to do them.

    Do three sets a day, in the morning, the afternoon and the evening.
  8. Isolate the Muscles

  9. The purpose of identifying the PC muscle before you begin is to ensure you are exercising only that muscle when performing your Kegels. Be sure your thighs, abdominals and buttocks remain relaxed; if they are tightened during the exercise, it will result in minimal progress being made with the PC muscle. You also want to breathe normally throughout the exercises--muscles need oxygen to become stronger and your PC muscle is no different.
  10. Use Caution

  11. Though you may be excited about the end result, you don't want to overdo it. Remember, this is still a muscle you are working and it's possible to strain or aggravate it if you do too many repetitions or hold each repetition longer than the muscle can handle. You need to build up your PC muscle strength slowly, and if you feel any pain or discomfort, stop and take a few days off.

Tuesday, March 2, 2010

snow day!

 
Who doesn't love a snow day?! I remember the feeling as a kid, anxiously waiting to see if the forecast would be true that massive amounts of snow would fall from the sky forcing schools to close! You'd wake up in the morning and listen to the news as they called off all the names of the schools that were closed that day. It pretty much felt like christmas if your school was on the list! It was a double bonus: not only would school be canceled but we'd also have tons of new snow to play in. If we were really lucky, we'd get a couple of snow days in a row! Even more time to keep putting off the homework that never got finished:) Later in life I learned that kids aren't the only ones that look forward to snow days - the teachers do as well, if not more!
         
Now that I'm an adult how do I capture that feeling again? Work usually expects you to show up even if the schools are closed. I remember one time before a big storm was to hit, we were told to get up early so if we needed to shovel we would still get to work on time. Nice! But we were dealing with deadlines so what are you going to do. And if you live somewhere warm, you never have that hope of a snow day. An earthquake day or hurricane day just doesn't seem as exciting. There are some things that give me joy similar to the snow day. I absolutely love taking a half day off on a beautiful sunny day and going to see a baseball game. Most teams have day games every so often. Not much beats sitting in the sun, sipping a beer, knowing that everyone else is still at work:) Some people are lucky to work at places that expect you to call in "well" instead of sick. If it is a gorgeous day or an epic powder day, they expect you to come in late or not at all.

Life is more than just working and paying the bills. It is easy to sweat all the normal day to day stuff and get caught up in the grind. It is easy to put off all the fun stuff and let time slip away. I've spent all this time worrying about surgeries and lamenting body parts that I am going to lose or have lost already and then I am reminded that this kind of stuff happens all the time, even to non-mutants. I know two people in the last two months that underwent laproscopic surgery to remove ovarian cysts. At least one of them lost an ovary in the process. They have to go thru the same recovery process as me, although they might not have had as much time to plan it. I'm not saying that everyone needs to start worrying and run around in a panic. My point is that we can only do what we can do to try and stay healthy. The rest is out of our hands. Don't forget to live in the meantime. Go and find your own snow day and have some fun.