More than Words

We met with the radiology oncologist today.  It seems most likely I will need radiation, but they won't know for certain until after the surgery.  If four or more lymph nodes are involved the recommendation becomes yes.  We already know one is involved based on the earlier needle biopsy.  Another factor that leans toward yes is my age.  He explained that there are four levels of lymph nodes.  He said they will remove levels one and two which will give them all the information they need and reduce the post surgery side effects.

He discussed the option of chemotherapy first followed by surgery.  He said this is a valid approach and is most successful when the tumor is fairly aggressive and hormone receptor negative.  In this scenario it is possible to shrink the tumor quickly.  My tumor is not as aggressive and is hormone receptor positive.  The medical oncologist will have more to say about each approach.  As for lumpectomy versus mastectomy, my palpable tumor is estimated at a couple of centimeters - not overly large.  If that was all, the lumpectomy would suffice, but there is cancer in multiple quadrants in the breast.  Somehow playing into all of this, I've got both invasive and non-invasive types going on.

The doctor examined me.  I find it funny that they step out to give you privacy while changing into the patient gown as if they're not going to come in and feel your breasts in a minute, not to mention the fact that I couldn't guess how many people I've shown my breasts to in the last few weeks.  While he was feeling my armpit he said, "there's nothing very impressive".  He was obviously talking about my lymph nodes, but it's just not a comment I've ever heard before while topless.

I wasn't expecting to get any more results until tomorrow, but he had the results of the PET/CT, bone scan, and MRI.  He said the PET/CT was fine as well as the bone scan, and the MRI only showed what we already knew.  At this point, he looked me in the eyes and said, "this means we're going to cure you".  It's hard to express the emotion I felt at that point.  It was like I exhaled for the first time in weeks while simultaneously realizing that at some point I had stopped breathing.  It's not as though any of the other doctors told me I was doomed or anything, it was just something else for him to stop and say what he said.

He explained that if we go with surgery, followed by chemo, followed by radiation, followed by tamoxifen that each step will get easier.  Here I thought laughter was supposed to be the best medicine!  He also told me not to get pregnant.  I laughed.  He told me he was serious.  I told him I was pretty motivated to not get pregnant before all of this happened so I'm really committed at this point.  He said it makes everyone look bad if I have a baby with flippers or whatever.  I guess it didn't take him long to figure out that I don't offend easily.

Tomorrow is the pre-op meeting with the surgeon.  Friday is the medical oncologist.  April 12th seems a likely day for surgery, but this is not confirmed yet.  Saturday I'm doing lunch / pedicures with SP.  I'm hoping to connect with a couple of girlfriends over lunch or coffee next week.  With any luck, I won't be seeing many doctors next week.  

Unsolicited

I ran across this and thought I would share. 
http://www.time.com/time/specials/2007/article/0,28804,1666089_1666563_1667824,00.html

Driving in Circles

I had an MRI today.  Basically you get injected with some contrast, lay still on a table, and the machine takes images.  About 15 minutes on each side.  I'm getting a little used to the whole tube/scanning experience.  This differs from the PET/CT and bone scan in that it's loud and makes a variety of knocks, pings and light saber type noises.  The table also does some shaking and feels like it's breaking down near the end of the imaging cycle.  I was told to expect this and that it's normal.  I should have my results by the time I see the surgeon again on Thursday.  The highlight is that I got a free pair of earplugs.

Kevin's back at work today.  Last week was his Spring Break.  I'm picturing a movie, "Girls Gone Wild - Cancun Swedish Cancer Institute".  This movie would feature a different sort of breast centric footage.  Okay, so it wasn't an ideal way to spend his vacation, but I'm grateful it worked out that he could come to a slew of appointments with me. 

Today was the first appointment I went to on my own, and I was going to a different location than the rest of my appointments.  If you know me at all, you know I am navigationally challenged.  I managed to get there smoothly.  Finding my way back to 5 South was not the most efficient process.  I was on Madison, ended up under the Convention Center, next thing you know I'm on Broadway, right on Cherry which took me to the freeway but not the on ramp.  At that point it dead ends to a one way street.  I turned right which sent me right back toward where I started.  This is when I decided to pull over and engage Jane.  She's the Brittish voice of the portable GPS.  I chose Jane, because I prefer being commanded to turn around by a proper lady.  Once I let her lead the way I was on James in no time and getting back to where I needed to be.

Yesterday's sermon was a tear jerker.  It was basically an encouragement to embrace and walk through your pain so that you can come out of it being fully present.  The reverend gave a couple of encouraging reminders.  1. You are a beloved child of God.  2. You are not alone.

One of the scriptures was Matthew 26:39

Going a little farther, he fell with his face to the ground and prayed, “My Father, if it is possible, may this cup be taken from me.  Yet not as I will, but as you will.”

Another scripture has been floating about in my head as well.

Matthew 5:29-30

If your right eye causes you to stumble, gouge it out and throw it away. It is better for you to lose one part of your body than for your whole body to be thrown into hell. And if your right hand causes you to stumble, cut it off and throw it away. It is better for you to lose one part of your body than for your whole body to go into hell.

Matthew and my surgeon seem to be on the same page.

Midorable

Midori sat bolt upright in bed at 7:26 a.m. and exclaimed, "I wanna eat kiwi"!  After having kiwi for breakfast, Midori and I took a bath and picked out clothes for impromptu family pictures.  Kevin called at least a half dozen places (my hero) until he found an opening at Yuen Lui for 3:30.  He then changed our tax appointment from 3:00 to 12:30.  Taxes are filed.  Photos are taken (which was a bit of an ordeal given that nap time was compromised).  Had some friends over for dinner.  The guys played cribbage and watched soccer.  The girls hung out in the play room, trying to keep up with Midori who ran in circles, did the blueberry dance, the bug dance, the frog dance, the cow dance, the dragon dance etc.  In all, it was a good day.

TMI - Beware of Overshare

Today:

Number of times I burst into tears - 1
Number of times I burst into hysterical laughter - 1
Number of times I burst into tears/hysterical laughter simultaneously - 1

This was all before noon.  Okay, I may be going a bit daft, but I'm thinking I'm entitled.  Kevin was telling me maybe we can get some twin pictures.  He was meaning that when we're both bald we can get pictures taken together.  I misunderstood.  I thought by "twins" he meant the girls, aka my breasts.  Photographing them now wouldn't really do them justice given all the bruising from the biopsy sites.  Kevin said it's a good thing you texted me that naked picture the day before you found out you had cancer.  This is where I burst into tears.

Technically, it was the day before my doctor found the lump.  We didn't know it was cancer until several days later.  Anyway, I completely forgot that I had done that.  It was such a carefree gesture.  I was struck by the fact that there was a day not long ago that I didn't know I had cancer.  Obviously, I had it when I took the picture.  It was just hiding behind perfectly healthy looking breasts.  Now those obliviously white breasts are captured digitally forever.

At this point I'm quite a sight.  My breasts are black and blue, and I've got track marks and bruising on both arms that would rival a junkie.  I doubt the bruising is going to heal before I lose a breast in a couple of weeks.  So I guess it is good that we have the picture, but it also hurts and feels a little mocking right now.  I'm glad Kevin has it, but I don't think it's anything I will want to see for a long time.  I know this feeling is temporary.  I know the important thing is to survive.  

We went to the plastic surgeon this afternoon.  I'm getting a little tired of going to doctor appointments.  I can't begin with the reconstruction until after radiation, but the plastic surgeon likes to have the initial consultation prior to the mastectomy.  I think there's merit to meeting early in the process.  First, there are some surgical decisions you can make up front that may aid in the reconstruction.  Also, I think I will be better prepared emotionally having seen her photos of mastectomies and reconstructions.  The reconstructions, while certainly more attractive than the post surgery condition still show significant scarring.  I found the whole thing creepy and disappointing, but it's better I have time to digest the images before I see myself in a similar condition.  She also told me that I'm in great shape and that I don't have enough belly fat to construct a left breast the same size as the right.  So no free tummy tuck.  There are definitely some other options though.

We spent some of the evening gathering documents for our income tax appointment tomorrow.  This will be the first year I haven't done my own taxes.  I'm looking forward to having it checked off the to do list.  Going to spend tomorrow taking a break from cancer.  No testing for cancer / talking about cancer / reading about cancer / preparing for cancer treatment / blogging about cancer.  This means I will probably have to avoid my phone / email / facebook / and everyone I know (apart from Kevin and Midori who are on board with the hiatus), but it will be worth it for a brief respite. Check back tomorrow for a benign blog update.    

Feminine Wiles

The bone scan was easy. 

The geneticist looked like a nice scientist.  I'm getting tested for BRCA1 and BRCA2 mutations.  There are some holes in my knowledge of my family history.  For example, my dad was an only child born in 1912 so there aren't a lot of breasts on that side of the family to know much about.  Even if I knew all af my history, and there was no incidence of breast cancer, they would still recommend the BRCA 1 & 2 testing due to my young age.  (Again, it's nice to be young even if it's not particularly advantageous in this case.)  He looked for indicators of other possible mutations in my mouth and on my hands.  There's nothing suspicious there.  If the genetic testing comes back positive, the likelihood of a new breast cancer and ovarian cancer are quite high, not to mention the implications for my relatives for a variety of cancers.  The geneticist said there are three possible results: 1. Positive 2. Negative 3. Uncertain (which means there is no useful information to be had, but you pay $3,500 dollars anyway).  We're praying the tests come back Negative.  Regence may or may not pay for the testing.  I should know in about a week.  If not, the cost will be the aforementioned $3,500 for the test plus a couple hundred or so for the office visit.  Hoping they pay, but obviously this is secondary. 

Got a name of a guy who can make a wig out of my own hair. (Thanks B. if you're reading this). 

I scored who I think is a good oncologist.  My surgeon referred me to a different oncologist initially, but I've heard rave reviews about another doctor.  Since I was already on the medical campus, I went and spoke to his nurse who said his practice is full.  She said she would talk to him to see if he would take a new patient.  She said IF he agreed to, the earliest he could see possibly see me would be the end of April.  She said she would check with him and call me back.  While we were having this conversation, the doctor walked by three different times.  The third time, he looked over the nurse's shoulder and said something I didn't quite catch.  Kevin later told me that he said, "if you need some help with that let me know."  Three minutes after we left the office we got a call saying he would accept me.  Not only that, he will see me April 1st.  Kevin claims it's because I'm hot. I say it's because God is opening doors for me.  Kevin says God made me hot so it's all the same difference.  If Kevin's right (which he usually is except for when he's wrong), I guess I should get to use whatever I've got while I've still got it.

The last thing I'll mention is that I got another injection today (for the bone scan), and another blood draw (for the genetic testing), and I'm starting to seriously look like an I.V. drug user. 

Crap Shoot

PET/CT was easy.  The hardest part was going without caffeine for about 30 hours, and food for 15.  Of course I had a splitting headache due to the caffeine addiction.  The other challenge had to do with some emails I got from someone we used to go to church with.  She strongly urged me to get a second opinion.  (Love you B. if you're reading this.)  She is skeptical about my treatment recommendation and the "outcomes" of my hospital.  She definitely has some good experience and information which I won't ignore.  I'm just in a sensitive place and was not particularly in the mood to discuss with Kevin the possibility of going back to the drawing board while also dealing with a migraine.  (Sorry honey about the swearing.)  Kevin said my super power turned out to be PMS.  Speaking of PMS, I've decided to celebrate it for now since my cycle will vanish when I'm on chemo.  Whether it will return, time will tell.  Procedure highlights:

• The tech asked me to please squeeze her peach.  Okay, it was just a foam peach to squeeze in order to pump up my vein for the I.V.
• I had to drink a giant bottle of oral contrast solution.  It was 'mocha smoothie' but not so tasty as you might imagine.  She told me that 25% of people get diarrhea, 25% of people get constipated, and 50% of people are not impacted.  I guess it's a game of chance at this point.
• The barium (?) injection they gave me resulted in a hot flash and metallic taste that lasted a couple of minutes.  Pretty interesting.

I came home afterward and took a nap while Kevin looked after Midori.  (Thanks babe.)  Overall, it was a pretty easy day.  Here's a couple of silver linings I haven't mentioned yet.

1. I am referred to as "young" in the context of cancer as opposed to when I was 37 and pregnant and they referred to me as "geriatric" (seriously).
2. As much as I adore Midori, I'm so glad that God has not put on my heart the desire to have a second child, because it would be so hard to have an infant right now; it would be a disaster to be pregnant right now; and by the time this is all done with it will be impractical if not impossible to have another child.     

The doc should have the results of the scan tomorrow. Tomorrow morning is my bone scan and genetic testing.  Work in the afternoon.  Rehearsal in the evening.

March Madness Continues

I still can’t believe my Huskies lost to NC on Sunday especially considering I had both boobs fully adorned in purple and gold.  Okay, so admittedly it’s just multi-colored bruising from the multiple biopsy sites, but still I feel I did MY part for the team.  Oh well.  Such is life.  At this point I should issue a warning (in case you haven’t picked up on it already). I will probably make a comment or two about a boob or two.  I may make a few other comments that aren’t, shall we say, wholly sanctified as I cope through this process.  I think God’s cool with it, but consider yourselves forewarned if you are of the delicate sensibility type.

Today I’m preparing for tomorrow’s PET/CT scan.  The Patient Preparation Form says, “the procedure will take approximately two to three hours from start to finish”.  I wonder if PET/CT Imaging time is similar to Comprehensive Breast Center time in which case I can expect to be there all day long.  I hope not.  I have 12 “responsibilities prior to the procedure”.  Highlights include no strenuous exercise for 48 hours prior and eating a  high fat, high protein, no carb diet for 24 hours prior.  Okay so I have to sit on my butt, eating  steak and bacon.  I think I’ve got it covered.  The day of the procedure, “a radiopharmaceutical will be administered through an I.V,” and I will need to, “drink oral contrast during a one-hour wait period prior to the scan.”  Family members and/or friends may accompany me to the appointment though they will be asked to leave prior to the injection for the test, presumably because I will be radioactive.  As a side note, I am hoping by the time I have the PET/CT and bone scan (for which I will also be radioactive) as well as potential radiation treatments, I will acquire a superpower.  I have put a poll on facebook, soliciting ideas for which superpower is the best to hope for.  During the one hour wait time, I am allowed to listen to relaxing music, “but reading and other activities are NOT allowed”.  Another reason I suppose family members and/or friends are not allowed to wait with me.  I guess they want to keep brain activity to a minimum.  If I am claustrophobic (which I hope I’m not), I was supposed to get an anti-anxiety medication from my doctor (which I did not). After I wait, I just have to lie still and get scanned.  “Scanning times vary from 20 minutes to one hour depending on the doctor’s order”.  Maybe I will find it restful.  I have been known to fall asleep while getting my eyebrows waxed.  If not, I’ve got songs to sing in my head and the Lord’s Prayer to recite.  Hope/pray there’s nothing else hiding in my body somewhere.

For Better or Worse

To my beloved Kevin:

Man, we’ve been through a lot have we not?  I think we’re going to be an encouragement to some crazy couple some day.  I’m sorry to put you through the wringer with all this cancer non-sense.  I’m sorry I’m going to become a creepy alien creature.  I know it’s going to be difficult for you.  I pray that you will have help to carry this burden on the days when I’m no help at all.  Not to wish days away, but I can’t wait for this to be over with so we can get back to the better part of for better or worse.  You’re my heart.   

The Bird of Endless Time  
   
Your fingers touch me like a bird's wing
like the feathers of the bird that returns
every hundred years to brush against a
peak in the Himalayas and not until the
rock's been worn away will time and the
kalpas end why do I think of the fable
when I'm close with you surely because
I want so many lives to feel your touch.

James Laughlin

The First Time Ever I Saw Your Face

To see a World in a Grain of Sand

And a Heaven in a Wild Flower,

Hold Infinity in the palm of your hand

And Eternity in an hour.

William Blake

It’s funny how small and vast my world became at once when Midori was born.  When she was brand new, to cradle her and watch her sleep was like holding the entire universe in my arms.  If you could somehow count my love for her, it would outnumber the sand.    She will be two and a half soon.  She’s smart as a whip.  The other day she was talking about her new barn and it’s silo.  Kevin said, “she knows more words than I do.”  She does struggle with the pronouns “me” and “you”.  I know it’s not because of anything to do with her cognitive ability, but rather because even I don’t understand where she ends and I begin.  The best way we’ve found to sleep is called, “sharing faces”.  This is when we lie down together her face on mine.  That’s how it’s always been with us – no space in between.  I worry about how my illness is going to impact her.  She is so sensitive and already showing loving concern for me.  What will happen post surgery when she can’t hug me as robustly or lie down on my chest or take a bath with her mama?  What will happen when she asks me to, “carry you?” (translation – carry me), and I am not able to lift her.  Will she be afraid when I look like a creepy alien with no hair/eyebrows/eyelashes?  My prayer is that she will feel secure, loved, and treasured and not afraid or rejected.  Please also hold her in your thoughts and prayers if you would.  I know someday that “you” and “me” will have different meanings.  I know someday we will have to be apart if only a little.  I just don’t know if she’s ready.  I know I’m not.

Humor Me

PMS is a funny thing.  When I’m at that point in my cycle, I’ve been known to cry at the singing of the national anthem or at the draft horse show at the Puyallup Fair.  (Come on you have to admit it’s moving when they talk about the industry of this great country being born on the back of the Clydesdale.)  Anyway, PMS + cancer diagnosis = very sentimental and likely to start weeping without prior warning.  Therefore, I beg your indulgence for a day or so while this blog turns a little emo.

How Sweet it is

Yesterday Kevin, Midori, and I decided to take a break from work and cancer. We went to the Seattle Aquarium followed by lunch on the waterfront.  I think it was the first spring day you could actually call sunny.  As the three of us sat eating fish/calamari/clamstrips and chips, I got misty eyed.  Kevin, reading my thoughts, said, "don't worry, we're gonna keep doing this forever".  If I didn't have cancer, I don't think the otters would have been as clever, or the fish as swimmy, or the lunch as tasty, or the day nearly as precious.  After lunch we went for homemade ice cream in homemade waffle cones.  I had a giant scoop of banana.  It tasted exactly like banana Laffy Taffy and not at all like bananas.  It was perfect though not nearly the sweetest thing about the day.


 

My Dance Card is Full

3/15/2011 We got the results from Friday.  The left breast is pretty much hosed, but righty is okay! I rejoiced in righty for about five minutes before I got a facebook from someone, telling me that her friend with my same situation got a double mastectomy for good measure.  Still less cancer is better than more, and each person is different.  3/17/2011 We had the surgical consultation.  They had me fill out a ream of paperwork, including an emotional questionnaire.  It asked about my feelings/fears/fatigue.  It had a section where you color in a thermometer according to your level of distress.  I pretty much wanted to cross off the thermometer and draw pictures of both middle fingers extended.  I was grateful that the doctor said neither, "how are you" or "it's nice to meet you".  He did ask me what I knew about what was going on.  Okay, it's a fair question.  He didn't know what I had been told or what I had been able to hear/understand/recall under the circumstances.  Then he asked me what I thought we ought to do about it to which I replied, I think we should consult a professional.  He seemed satisfied with my reply.  I think we are going to get along just fine.  I am going to need a mastectomy of the left breast, chemotherapy, and probably radiation (depending on how many of  the lymph nodes are involved).  The surgery and treatment will take about a year, and year after that I can do the reconstruction.  Over the course of the next two weeks I am having a PET/CT scan, blood testing, genetic testing, plastic surgery consultation, MRI, radiology consult, oncology consult, and a pre-op visit.  Righty should be safe unless the medical tests reveal something new or the genetic tests reveal a likelihood of recurrence.  Surgery should happen in about a month. He gave me a stage 2a or maybe 2b (pending confirmation by the battery of tests and pathology of what they remove during surgery).  Stage 2 has a high survival rate.  Silver linings: six weeks off work for surgery, I have an excuse to buy a platinum wig and find out if blonde's really do have more fun, and they can make a boob out of my belly fat!  Who knew I would be getting a free tummy tuck!  This will come in handy, especially considering I've taken to comfort food and gained about five pounds in the last couple of weeks.  A side note is that Kevin is thinking of starting a new charity similar to Locks of Love only it will be more like Bellies for Boobs.  The doctor explained to me that it's important to fully plan out the reconstruction, because you can only use the belly fat once.  I asked him why you can't go back to the well multiple times.  He clearly wanted to laugh (though I was serious).  Did I mention we are going to get along well?  Other upsides:  maybe I'll be eligible for medical marijuana, and if not, I will have a chemo port so I can easily and efficiently push a variety of drugs into my blood stream.  I should probably mention that if you don't know me well you should know I have a dry sense of humor.  When in doubt, I'm likely not serious.  A few serious comments: I'm so grateful that it's not more advanced than stage two.  God is keeping me close.  God's people across many church communities are praying for healing and peace for our family.  I've even got a dear atheist friend who has agreed to pray to no one, and my best friend in Florida is praying to "anyone who will listen".  I know God will go with me, and I have faith in God's will being done.      

In Stereo

3/11/2011 - Sterotactic Biopsy.  The instruction sheet says, "you will be asked to lie flat on your stomach on a mammogram table and place the breast in question through a special opening in the table".  Evokes a strange image.  Trust me, the reality is stranger.  The sheet also says, "the entire procedure takes about one hour and requires that you lie very still with your head turned to one side."  Did I mention that at the Comprehensive Breast Center, one hour = three hours?  Special mammogram table = incredibly uncomfortable stainless table that smashes your breast between mammogram plates which are incredibly awkward to position and get the target in place.  (Yes, your breasts now have targets.) This requires a lot of manipulating, smashing, and re-smashing.  The part the instruction sheet doesn't tell you is that they raise you up on hydraulics and work underneath like they are changing your oil.  The sheet also does not mention that with each sample, there is a loud snapping noise followed by a hoover noise, because your breast is literally being vacuumed during the procedure.  Every time they do anything they take a mammogram image during which your job is to "stop breathing".  The end result is a bunch of samples from each breast that look roughly like worms.  The procedure was a bit of an ordeal, despite the heated gown and personal locker.  Lost some blood.  Went home feeling trashed, wrapped up in an ace bandage, armed with ice packs.  Got a call at home with the core biopsy results from Wednesday's procedure.  Lump and axillary nodes are cancer.

Hell of a Baseline

3/9/2011 - Kevin & I went to the Comprehensive Breast Center.  Upon entering the waiting area I noticed the music was louder than is usual for waiting areas and that it was playing a dramatic opera.  Interesting choice.  At least it was not a requiem.  They took me to a changing area, gave me a heated gown, and showed me to my locker.  Think spa only different.  About three hours into the one hour appointment and 20 mammogram images later, plus ultrasound, core biopsy of the lump, and axillary lymph node, the doctor said, "we've seen this degree of calcification that did not turn out to be cancer, but it's not likely.  I'm moving forward with the assumption that it's cancer.  The pathology should confirm within the next couple of days.  Given that multiple quadrants are involved, we are likely looking at a mastectomy".

Buckle Up

3/4/2011 - the annual physical and baseline mammogram.  I took off as much clothing as I could and still remain decent for the weigh in.  When the scale registered 117 pounds, I was pleased with my lack of shame at partially undressing in the common area.  Note that I may be at pre-baby weight (finally), but pre-baby shape now that's something all together different.  I submitted to the usual battery of questions that serve to remind me that there's a whole other category of to dos that I'm not doing.  Do you exercise regularly?  Not exactly, but I do have an active toddler.  Do you take a multi-vitamin?  For about a week after my annual physical.  Do you take fish oil supplements, vitamin D, calcium supplement?  No, no, no.  Do you wear sunscreen?  Yes.  (Not entirely a lie.  I mean I have worn sunscreen on at least a couple of occasions I think. Never mind the fact, that the times I've applied sun accelerator probably numbers higher.)   Do you do a monthly self breast exam?  No.  Do you wear your seatbelt?  Yes!  Finally, a question I can honestly say yes to!  What can I say?  You have to celebrate the minor victories in life.  On to the exam portion of the visit.  The doctor gave me a reminder demonstration of the self breast exam.  It's slightly more likely that I will begin this practice than I will take up scrap booking, making pie crusts from scratch, dusting, needlepoint, or country line dancing, but only slightly.  At some point during her instructions she became distracted.  Distraction morphed to concern.  Concern to concentration.  Ultimately, she told me there was a two centimeter lump in my left breast, and that I didn't need to go forward with the baseline screening mammogram.  What I needed was a diagnostic mammogram at the Comprehensive Breast Center.  Buckle up baby.  I think the ride is going to be bumpy.