Sunday, May 24, 2009

I'm ready to be new again...

but there may be a small problem.

I went to visit the radiation oncologist on Thursday afternoon, before heading up to my cottage for a much needed mini-vacation.
In keeping with tradition, our 2:45 appointment (which we had to be there 30min prior to) was pushed back to 3:20-ish.

The meeting was worth the wait, however, as both Dr Read & her nurse were very pleasant and professional. The nurse took my medical history (which I think I could recount in my sleep at this point), and assured me that Dr. Read was very honest with her recommendations. If she thought I didn't need radiation, she would come right out and tell me.

I changed into a gown and Dr. Read came in to perform the standard physical exam. Upon completion, I was left alone to change and ponder the outcome of the meeting. The pondering was short lived, however, as Dr. Read returned moments later and explained to me that my case was borderline. She referred to cases like mine as "controversial", due to the inability of the professionals to agree on the proper resolution. The pros and cons of the treatment were laid out before me (below) and the final decision was put to me.

One would think that if radiation reduced the likelihood of my cancer returning, it would be a no brainer. My mentality going into the meeting was something like "cancer bad, radiation kills cancer, no more cancer, no problem. Let's do this".
However, as I have indicated in the title and first line of this blog... it's not that cut and dry. You will see why shortly.

I would like to briefly relay to you the reasons for/against treatment,
and then the pros and cons of treatment before discussing how I feel about it.

Why I don't necessarily need radiation-
*Only one node involved
*Cancer in the one node was completely encapsulated (it hadn't progressed beyond that node)
*my margins were clear (meaning that the cancer hadn't progressed/into toward the chest wall)

Reason why I should have radiation-
*I'm young, therefore I have a longer time for the cancer to return
*My cancer is very aggressive, therefore more likely to return

Pros of treatment-
*Radiation would effectively shrink/kill any cancer cells that are
still present in the chest area (* see note below)
*Local recurrence without radiation is 15-20%, and with radiation it is only about 10%
*A little more piece of mind, knowing that I have done everything I can to get rid of this horrible disease.

Cons of treatment-
The side effects, which I will list below.
Please note that these are not guaranteed side effects. Depending on how my body reacts to treatment, I may experience none of them at all.

*Darkening of the skin on the breast (or lack thereof)
*Development of superficial blood vessels on the skin
*1% chance of a rib breaking easily
*1-2% chance of lung scarring and development of a cough 6-8 weeks after treatment
*The chance of lymphadema jumps from about 5% to 10% with radiation
*remote chance that it could injure the nerves that work the arm
*slight increase (2-4%)in the likelihood of developing an additional form of cancer
*radiation can only be done once to that region of the body, so if the cancer comes back, radiation is no longer an option
And the big kick in the face-
*radiation could lead to scarring of the tissue in affected area, making implants impossible. If I were larger, this wouldn't be a big deal, as I could
utilize other methods of reconstruction (TRAM flap etc). However, because I have little fat on my body, the only option open to me would be implants.

I'm at a loss as to what to do.
I imagine that most people are thinking "If it's going to save your life, who cares about reconstruction".
Well, being that I'm only 27 years old, I guess I care about reconstruction.
Let me lay out the best/worst case scenarios for you, so you have a better idea of what I could be facing.

Best case scenario- I have radiation and everything goes well. I get the report back from the geneticist and he tells me they have not found a hereditary component to my cancer. I don't have to take the precautions otherwise necessary. I have my other breast removed and have implants put in. I am essentially physically whole again.

Worst case scenario- I have the radiation and it doesn't go well. There is a build up of scar tissue making it impossible to proceed with implants. I
receive word back from the geneticist that they found a hereditary component. To reduce the likelihood of having cancer again, I have my other breast and
my ovaries removed (remember, this genetic component puts me at higher risk for develop ovarian cancer). This essentially leaves me an asexual human being. Pretty much all the parts that make me "female" are gone.

I honestly am at a loss as to what to do.
I don't want the cancer to return. I don't want to die. I don't want to spend the rest of my life fighting and undergoing chemotherapy.
On the other hand, I don't want to live my life without breasts. I don't want to deal with the expense of breast prostheses and the accompanying mastectomy bras. I don't want to be stuck buying clothing/bathing suits that hides the fact that I don't have breasts. I certainly don't want to have to deal with the looks that people give if I don't wear the prostheses. I don't want to spend the rest of my life wanting to cry every time I look in the mirror.

When this started, I was convinced that the hardest decision I would have to make was whether or not to have the mastectomy. I took some solace in the fact that they could be reconstructed, that I could be made new again.

So what now? What decision should I make?
Have the radiation and live with the consequences if I can't have reconstruction... on the off chance that I'll be in the 5-10% that radiation actually helps.
Not have the radiation, get my boobs back and pray that the ghost of cancer past doesn't decide to make a surprise return visit. On the off chance the cancer does returns, spend the rest of my life wondering if it could have been prevented.

Why do I have to make decisions like this?
Why can't I be like most people my age, who's biggest decision is what colour car to buy, or whether to look for a higher paying job.

(*Note* The radiation oncologist informed me that chemotherapy, although effective in killing cancer cells throughout the rest of my body, is not effective in the region where surgery occurred. This is due to the severing of the capillaries (tiny blood vessels) leading into the area. The chemo, which travels by way of the blood, generally can not successfully make its way into the area where surgery has occurred.)

Thursday, May 21, 2009

I forgot one thing...

In my list of "Things I didn't expect from chemo", I neglected to mention my chemo-induced menopause and the annoying hot flashes that go with it. I've been assured by my doctor that most women my age return to a normal cycle after chemo has stopped. My fingers are crossed.

Ok... The long awaited information from my most recent appointments with my surgeon, my oncologist and the geneticist.

Dr. George visit (April 6th)-

*Highly suggested radiation

*6 to 12 months post-chemo wait before reconstruction can start (longer wait =greater satisfaction with reconstruction).

*appointment with plastic surgeon and him in July (which I have to rebook as we will be at the cottage).

*not allowed to gain weight for tram flap procedure, or ever (increases likelihood of recurrence).

*not allowed to least no more than 7 a week...and no saving up(also increases likelihood of recurrence).

*interested to see the results of genetic testing that will be done April 28th

Dr. Vandenberg visit (May 5th)-

*Also very interested to see results of genetic testing- will help to gauge if other breast and ovaries should be removed (if cancer is hereditary, then yes).

*Said ovaries don't usually give a problem until age 35 or so... so if it is hereditary, I will still have a few years to have a child before removal.

*Possibility of taking part in a clinical trial separate from the one I spoke if initially. A 10 year longitudinal study to investigate whether earlier administration of drugs given to people with bone mets (breast cancer spread to the bones) could help prevent bone mets in the first place.

*Set up a consult appointment with radiation oncologist for May 14 to discuss my radiation treatment.

Genetics testing with Dr. Ainsworth (April 28th)-

*Filled out a questionnaire regarding family history of cancer. It asked about people I didn't even know existed. This meant that my mother and I had to call my grandmothers to ask questions. I mean... there is nothing like calling someone in their 80's and drilling them for details about how their siblings/parents/husband died. Ugh.

*Spoke with the Geneticist regarding family history. In addition to breast cancer, he was concerned with the "inherited predisposition to...colon and/or endometrial cancers" on my mother's side of the family. He suggested colonoscopic and/or gynaecological surveillance for my mother and her siblings. Yippee.

*Indicated that given my young age, it is more likely that my cancer is hereditary.

*He then scolded me for my lack of (rather detailed) knowledge of DNA and mismatch repair genes (perhaps he didn't know I've been out of high school for almost 10 years).

*If they do not find a mutation, that doesn't mean that without a doubt, my cancer isn't hereditary. In fact, it could be the case that "the present technology isn't sophisticated enough to identify it." (it being the gene responsible).

*I then gave about a quart of my blood (from two different spots on my arm) and was freed to go home.

*The results should be back in 3-4 months.

Interesting facts-
BRCA1 carriers
Females- 65%(or more) will develop Breast cancer and 39%(or more) will develop ovarian cancer by age 70
Males- Increased risk of Prostate cancer

BRCA2 carriers
Females- 45% (or more) will develop Breast cancer and 11% (or more) will develop ovarian cancer by age 70
Males- Increased risk of Prostate cancer

"In addition there are reported to be above average risks for a number of other cancers which are especially associates with BRCA2 mutations including those including the stomach, pancreas, gall bladder and/or bile ducts as well as melanoma of the skin or eye."

The eye??? come on!! That's grossssss.

*In case you are wondering what I am quoting, it's a nice follow up letter that Dr. Ainsworth sent me, reiterating everything that we talked about in the meeting.

Wednesday, May 20, 2009

The end of chemo blog entry

I am officially two weeks post-chemo and most of the nasty side effects have started to subside. As I was lying in bed last night, I got to thinking about how different chemo was from what I expected.

Way back when this all started, my surgeon, Dr. George, told me that most of the women he spoke with after finishing treatment, told him that chemotherapy was the worst part. At first I laughed, thinking to myself... "of course you are going to tell me it's not THAT bad, you are about to freaking slice off my breast". However, as of right now, I have to say he was correct. Don't get me wrong... having your breast removed is both physically AND emotionally traumatic, and the recovery is long and painful (remember they removed tissue way up into my underarm), but it was nothing compared to chemo.

In addition, I think the isolation that I've experience over the last 4+ months, has only served to worsen an already bad chemo experience. Not having a job (to occupy the mind) and having no friends living within 2 hours of you, makes life... well, dull and dreary. Especially for someone who likes to travel and keep busy.
The fact that Adam can't come to Canada to work and be with me, makes matters worse. Big thanks goes out to immigration and the Government of Canada for that!
I mean, the jerks make it nearly impossible to get a skilled workers visa, AND won't even give citizens of the U.S.A. a holiday working visa (but will to literally 20 other countries!). What the hell?!

Anyway, on to the point of this blog :)
In order to convey the differences between what I had expected, and what actually happened during chemo treatments, I've made two lists.
Here they are:

What I expected-
-nausea (this was pretty much a given, everyone knows about it)
-hair loss
-lowered immune functioning
-mouth sores
-loss of appetite
-weight fluctuation
-metallic taste in mouth (I only had it once, thank goodness)
-muscle and joint pain (from taxotere)
-chemo brain (yes, it is real... as much as I didn't want to admit it)

What I did not expect-

-50 self-injections of Neupogen to increase white blood cell proliferation (counteract decreased immune functioning)
-change in appearance (dark circles around eyes, horrible skin)
-bloody noses (only after taxotere treatments)
-runny roses and watering eyes (taxotere)
-heartburn (possibly from chemo or 1 of the many side effect reducing medications)
-painful skin (any sort of tactile stimuli felt like poking a bruise, lasted 1-2 weeks post-chemo)
-rash on hands and face
-tingling in feet
-finger nail sensitivity
-mystery bruising (usually on legs)
-sensitivity to light/sound
-swelling of taste buds resulting in extreme sensitivity
-thick coating on tongue and cheeks (lasting over 1 week post-chemo)
-food tasting awful(from above side effect)
-fatigue (to the point where the 1km car ride uptown resulted in a nap)
-6+ trips to the hospital resulting in 2 hospitalizations and/or more antibiotics
-overwhelming feelings of hopelessness, depression, and jealousy.

Now, although not among my prouder moments, I do admit that I had moments of extreme jealousy. Being holed up in a house (so as to avoid infections... or due to a variety of side effects), while other people your age are living their lives, going out with friends and having a wonderful time, can hardly be said to cultivate friendly feelings. As I said, I'm not proud of it, but I definitely had moments where I had a strong dislike for pretty much everyone. So... my apologies. I'm thanking my lucky stars it's over.

On a positive note, here are three good things!
1) I'm heading up to my cottage tomorrow, after my consult with the radiation oncologist.
2)I've also decided that I will be making the trip to D.C. in June :)
3) I took my I.V. out on Monday. Yes, I literally pulled it out myself. After lugging that darn thing around for a week, it is a welcome change.

Sunday, May 10, 2009

Happy Mother's Day!!!

This Mother's Day, I really wanted to think outside the box and do something really awesome for my Momma. Problem was, those things called epiphanies are tricky little devils, and they never seem to occur when you need them.
I was really starting to worry, until the perfect idea hit me (at 7:30 this morning).
Lying in bed, writhing in pain, I thought to myself "Self, the best present you could ever give your mom would be a 6 hour totally isolated hangout sesh with you. me. whomever."

How could I accomplish such a feat, you ask? It's easier than one would think!!
All I had to do was get myself a little fever of 38.8, and wake up my mom.
We spend almost the WHOLE day hanging out in a little room in the Emergency room completely alone.
No pesky family, no flowers, no distractions (with the exception of those coming to steal my blood and stab me with needles).
It was totally awesome. Just my mom, staring lovingly at me as a drifted in and out of a rather uncomfortable fever/drug induced sleep.

The best part is that we get to go back again tonight at 10pm and AGAIN tomorrow morning at 6am for more IV antibiotics and fluids.
(note: after that point, a home nurse will come and hook me up every 8 hours for the next 7 days)

Probably should be nominated for best daughter in the world award. Probably.

(Sorry for ruining mother's day mom)

Friday, May 8, 2009

Waiting for a light at the end of the tunnel.

I'm feeling a little bit frustrated at the moment. As you already know, I finally finished my chemotherapy treatments on Tuesday. It's been a long, incredibly trying battle. To be honest, there may have been a night or two (curled up on the chair bawling my eyes out because I had to go back to the ER), that I may have had doubts that I was gonna make it. I've been in and out of the dang emergency room with so many fevers and assorted ailments, that they know me by name. I've been poked with so many needles, I literally looked like a black/blue/yellow pincushion.

Relieved doesn't even begin to explain how I felt when I finished my last treatment. Hoping, although making sure not to say it out loud, that the worst of the crappiness was in the past.
One would figure that, after having your breast taken and being pumped so full of toxic chemicals that you literally can't function, it could only get better from here right?

Haha... I actually believed that. Man, how silly could I be?

Since January, I've been looking forward to finishing my treatments, so I could go back to D.C. to visit Adam, and his friends/family. It's been my bright light at the end of the tunnel, if you will.

Well, I'm finally going! At least I thought I was finally going.
I have my flight booked for June 2-13th, the one little problem being that no one will cover me for travel insurance.

Correction... they will cover me, but for nothing related to my cancer (the joy of pre-existing conditions).
So... if I happen to get a fever in D.C. and they deem it to be because of my cancer (regardless of whether it is or not), I have to foot the bill.
I think it is fair to say that insurance companies will do ANYTHING to avoid paying any sort of claim. I know that if I do go, and do happen to get sick, they will attempt to screw me in any way, shape or form possible.
Every insurance company that I've talked to has told me that my condition would have to be stable for at least 3 months (up to 6 months) before they will even begin to consider covering me.

Maybe I was a bit naive, but I had assumed that if I paid enough, SOMEONE would cover (which I was prepared to do). Apparently, I'm finding this isn't the case. So, here I am, left with the choice to either suck it up and pray to God that I don't get sick while in D.C. or cancel the only trip that has given me any glimmer of hope and happiness in the last 5 months.

I just don't understand. For all intents and purposes, Adam and I are good people. I just don't understand why there is always something standing in the way of us being together (i.e. Korean immigration issues, my cancer, Canadian immigration issues, distance, insurance issues, money issues) . I just feel so dang disheartened and beaten.
It's hard to try to keep a smile on your face and keep fighting when it feels like you can barely keep your head above water.

My second last hospitalization

He got nap time... I didn't

Tuesday, May 5, 2009

Just a quick post to let everyone know that I am now officially finished my 6th round of chemo. Both Adam and my mother accompanied me to the final round today. It was a rather frustrating and drawn out process... but it's now done, and I couldn't be happier.
As a post-chemo celebration, we went to a vegan Chinese food place for lunch and to see Wolverine tonight. I'm dead tired. Just two more things before I bid you goodnight...

1) I have a appointment with my radiation oncologist on May 21st to discuss my radiation treatments, that as far as I can tell, will be starting about 6 weeks from today.
In the meantime, I will be heading to D.C. 4 weeks from today to visit Adam, his family and friends ;)

2) I am starting a physiology course from the U of T next week and am really looking forward to it. It's a prerequisite for Nursing, which I am hoping to apply to in September 2010.

I've been up since 5:45 am. It's bed time. Goodnight.
Related Posts with Thumbnails