Evolution of Hair

I thought this was interesting looking back through my pics this past year: I'm guessing on dates to save reading back through all the posts

Before diagnosis:

When it all started falling out (FEB '09):

When I shaved it off (Feb?)

Fun with wigs: *ignore the silly demeanor and hand on the beverage

Hats, scarves, and bandannas:

No eyebrows or lashes (Aug) *tan!

Regrowth (Aug) *I was fuzzier than the bird

(Sept-Oct)

(October)

(Dec) *a little implusive blue dye

(Dec) *featuring a little bleach with an overexcited sister and her curling iron

IUD

A couple of weeks ago I got my Mirena placed. I thought it would be a painful procedure, but it wasn't bad at all. I asked my gyn onc for a referral to someone who has done a million of them, and she referred me to a gynecologist who has put over 1000 in. She prepared me the night before by prescribing me a drug to dilate my cervix so that the sound (the stick that measures the depth of the uterus) would go in smoothly. Then she injected lidocaine during the procedure to numb the pain. All in all it was pretty easy- much different from the experiences of the many women that I have seen undergo the procedure. After that I had some cramping and then I was fine.

Until... When the device is placed in the uterus, the string is cut so that it sticks out a little from the cervix. This is useful to check for correct placement. Well a week after getting the IUD placed, I could no longer feel my string, and so made another appointment to see my doctor. When I went in again, the doc tried to visualize the string with a colposcope (magnifying glass to view the cervix) but couldn't locate it. So I had to go get an ultrasound to verify the placement. The technician eventually found the string and ensured that everything was in place. It was also a good learning opportunity, as he explained what he was looking for on the ultrasound-- basically the IUD looks like a bunch of lines that I never would have been able to identify on my own (the picture above is not MY uterus and IUD- but this shows how hard it is to actually see the device via US). What was most beneficial, is that we both got to look at the image of my uterus and pelvic cavity, which showed no signs of change (or tumors) other than a few uterine fibroids. Soooooo after this whole ordeal, I got an inadvert checkup on how things look on the inside.

Otherwise life is booooooooooring- no job still- just working a little on my thesis and studying a bit. I am still sleeping as late as possible- mainly because there is nothing else to do. I did start working out though!

Mirena Facts

1st Checkup & Vitamin D

hello blog...

Friday I had my first post-treatment checkup which went well. My doc said the plan is blood work every 3 months and CT scan every year, and to report if I develop any symptoms. I asked her what kind and she said mainly bloating, weight gain, and loss of appetite from the cancer seeding to the abdominal cavity. If I had any problems then I would get a CT scan. Mainly the best monitor is my CA-125 tumor count. She said it will take several tests to find my average level, which could take a year to establish. She also reassured me that because my initial count was so high (412; norm 35), it would be easier to detect cancer growth than with other tumors.

I got my blood drawn on a Friday, so I had to wait until today (tues) to get the results. They drew my vitamin D level as well- I didn't know why but then I researched:

• Using newly available data on worldwide cancer incidence, researchers at the Moores Cancer Center at UCSD have shown a clear association between deficiency in exposure to sunlight, specifically ultraviolet B (UVB), and ovarian cancer
• In general, ovarian cancer incidence was highest at the highest latitudes in both hemispheres
• Taking 1,000 international units (IU) of vitamin D 3 daily appears to lower an individual’s risk of developing certain cancers – including colon, breast, and ovarian cancer – by up to 50 percent,

Interestingly enough I live in Seattle where everyone seems to be Vitamin D deficient because of the lack of sun. I guess I could say that this contributes to one of the many answers to the whole why me? question. I wonder how effective supplementation is for curing cancer or preventing remission... I was taking a high dose in my smoothie but stopped doing those after I swore off frozen fruit. I guess I need to buy some more. So far my levels are normal (40 something).

Back to the more important result: CA-125 = 13 !!! That's my normal when I was on chemo so it's very good. Yayyyyyyyyyyyyyyyyyy. It was a hard 3 days. Honestly I don't know what I would do if it comes back. To have to go through that entire process all over again- with new chemo drugs and having to lose my hair AGAIN. A whole year of that crap. Most of the time I don't think about the cancer at all- I have so many other things to worry about (job search, waiting to return to school, growing hair). It's like I erased the whole bad part of last year. I seriously can't believe how I put up with all that shit. It's nice to say that I have moved on and will continue to move forward until every three months when I have that checkup. When I am forced to think about it again, I naturally get all worried. This time I really was debating waiting to call about the results. Of course they don't call me- I have to call them. I was thinking that again I would put off knowing so that I could enjoy the holidays. Actually last year that didn't really work because I was trying hard not to tell my parents and that was agony. If the cancer was back this time it would totally change everything. A definite damper on my X-mas trip back home.

In sum, everything's normal and I'm cancer-free. Thursday is my birthday and also is when the SU nurse practitioner first felt my mass. So it's been almost exactly a year since the signs and over a year since the symptoms began. I'm looking forward to a better birthday and the start of a new year.

Surveillance Mode Details

The doc says I'm in surveillance mode. Basically this means that I get a CT scan every year and get my tumor markers checked every 3 months. Otherwise I'm supposed to notify her if I start having any new symptoms. So far so good.

I am scheduling an appointment to get an IUD placed. I need the progesterone in the Mirena to balance out the daily estrogen that I'm currently taking. Rather than take progestin in pill form every 3-4 months, I can leave my Mirena in for over 5 yrs. I'm not looking forward to the pain, and I have a nice little stash of oxycodone just for the occasion. I have actually had the experience of inserting one and I know for a fact that they are extremely painful unless you have had kids. Thank god for drugs...

Leave of Absense

I think this will be the second to last post for awhile unless something new comes up. Everything seems to be going ok on the cancer front. I have an appointment with my gyn onc on Monday so I will update about that. I am so happy to be done with everything and my big sunburn on my back is finally starting to heal, although now it looks like some kind of fungus because it's lighter than the rest of the skin on my tan back. I also got my port removed a couple of weeks ago so I am most excited about that. No more alien probe/tumor on my chest!

Other than that I have come to another major roadblock in my life. After talking with the nursing program director and dean (or yelling rather), it turns out that I won't be returning to school until spring quarter which is in March. Fuck that. I was told that I would be able to finish up with independent study, doing clinicals this fall and winter and then being done by March. The director instead tells me now that they have no one to teach the one-hour seminar included with the course, and so now I have to reenter the program with the upcoming cohort at the same time I took time off. They said it was "for the best" so I could allow myself to heal fully. Honestly, this is the dumbest thing I have heard in awhile because taking 6 months off IS NOT good for my education at this point. I need continuous clinical experience- with a big break like this I am likely to be extremely behind. I'm scared that I will be so behind that I will again have to repeat the course. WTF?!? Fuck Seattle U. I'm so done with their fucking program.

Sucks cause now I have no job and no school, meaning that my loans go into repayment mode soon. And I lose all the loan money I have been using to live on. Of course I told this to my dean and they apparently don't give a shit.

So now I am figuring out what to do with myself. Yesterday I returned from a 2 week visit to the Midwest to see my family and friends. Now in a week I am going on a road trip along the west coast from Seattle down to L.A. with a good friend. Should be another 2 weeks. Like I have anything else to do... I have been looking for jobs but so far have been denied new graduate opportunities because there are only 1-2 openings at the major hospitals around Seattle. I have no experience for the rest of the nursing jobs, plus no one is willing to hire an RN who will just quit as soon as she finds a nurse practitioner position. So frustrating.

Well that's all for now. Hope everyone out there is well.