My Armpit Looks Like Bacon / I Need a Vacation

Okay, I've really been neglecting my blog.  There's been a lot of family crisis since September.  It's kind of sad when cancer is not the most disruptive thing in your life.  (I'm not joking.)  Anyway, since I last blogged, I finished off the chemo which is great.  I recall the last round as being sort of anti-climatic.  There was no fanfare or certificate of meritorious conduct or the like.  Still being through with that is wonderful.  I've been doing the radiation.  It turns out I don't need the breating device.  Instead I'm using something called a bolus.  Wikipedia calls it a "tissue equivalent substance used in radiation therapy".  Basically, they slap some saran wrap on me (not kidding) and then put a layer of synthetic whatever on my chest which keeps the radiation a bit closer to the surface and a bit further from my heart.  I had round 25 of 30 today after which I'm scheduled for a 3 day "boost".  My 6 weeks of radiation seems a lot like seven.  Anyway, I'm getting close to the end which is good, because my armpit looks a lot like bacon.  My chest is pretty crispy too.  The good news is that since the surgery did so much nerve damage, I don't have a lot of sensation in my armpit.  It just looks really painful.  I'm scheduled to finish December 13, which would have been my dad's 99th birthday.  I'm going to take that as a sign of good luck.  There's still the five years of tamoxifen and more surgery, but I'm going to say the bulk of the treatment is behind me.  I think I've got about 95% range of motion in my left arm.  I started going wigless to work this week.  Think Ellen DeGenerous only shorter.  Not my first choice, but I decided I'm sick enough of the wigs that it's close enough to acceptable.  It's been a mixed reaction.  I've received a lot of compliments.  Some people have said nothing.  One guy almost spit the coffee out of his mouth when he saw me.  A couple of people have pet it (which I don't mind as long as I know you).  Since my chest is crispy, and my armpit is bacon-like, I've tried to explain my appearance to Midori.  She has since started giving people "treatments" with her Halloween flashlight.  Suffice to say, she is as cute as ever.  I have the latter half of December planned for vacation, assuming things don't implode at work.  We're not going anywhere, but I'm really looking forward to the time off.  Looking forward to being done with 2011 altogether.

Delicate Sensibilities

I met with the radiation oncologist today for another consultation. The next thing is a planning session on October third. They will do a CT scan and give me some placement tattoos. Since they are treating the left side, sometimes there is an issue of the heart being to close. If that's the case, apparently they have some type of breathing apparatus they use. He said the heart moves during the breathing cycle, so they give the radiation when the heart moves farther away. He described it like a snorkel. Apparently, you see some kind of indicator of the right time during the breathing cycle when your heart is most distant, and you push a button which locks this device such that you can't breathe, and your lungs stay inflated. This is when they give the radiation. Then when you need to breathe, you push the button again which presumably interrupts the radiation. You get the indicator again, push the button, resume the radiation, etc. I guess in the end you get the radiation, don't suffocate, and don't get your heart zapped directly. If this ends up being necessary, there will be another appointment to get that together the week of Oct. 10. Assuming everything is a go, there will be a practice session October 21, and my treatments will begin Oct. 24. They're daily, five days a week. He said there will be between 28 to 30 treatments. The most common side effects include fatigue and skin reactions. Since I have no recollection of what energy feels like, I'm not sure whether the fatigue will even register. Though he didn't mention it as a potential side effect, I'm still hoping to develop a super power. Activities to avoid during treatment include sun exposure to the treated area (should not be a problem), hot tubbing, swimming, shaving under the arm of the treated breast, using deodorant on the side being treated, and wearing a bra. I don't think I would forgo these last three unless it was a matter of life and death. Oh well I'll try to embrace my rustic side. At least it will be winter, and I can just go around in giant bulky sweaters.

Serenity

I'm down to three rounds of chemo.  I find out next week when I start radiation, but it will probably be mid to late October.  Around March, I will have a full chest MRI and a mammogram of my right breast.  It's a long time to wait for a first indication of whether any of this worked.  I love that people read my blog, but I should warn you about this entry.  If you follow this, because you like that I keep a sense of humor despite my situation, I probably won't say anything too funny tonight.  (I've been taking a short reprieve, but I expect to be fully sarcastic in a couple of days.)  But if you read this, because you want to know me better, or because you love me, then read it, because it's about me.

I feel like I need more time to spend alone with Kevin, because he is my heart.  We've started to rediscover a tenderness for each other that we've neglected the last few years as we became new parents, new family relationships have emerged, and balances have shifted.  It's an honor to have witnessed the man he has become in the time I've known him.  I've not always seen what is before my eyes, but I see it now, and I treasure it.

I feel like I need more time to spend with Midori.  Sometimes I think I could spend every minute of every day with her, and it would never be enough.  She is my joy and my eternity.  I feel like you could crush me into nothing, and the dust of my bones would still love her.

I feel like I need more time for myself so I can write my blog, organize my pictures, make a DVD for the guests of Midori's third birthday party, or just sit and cry if I feel like it.

Then of course I have to go to work, and one doctor after the other, and all of the places that people have to go.  If only I could figure out how to stop time.

At our last church, one of the pastors gave a sermon, that has been on my mind.  I don't recall the entire context, but he was talking about trusting God.  He said that the area where he struggled with this was concerning his children, because he felt for them that he wanted to be the one to choose.

I have a lifelong friend who just had a mastectomy, and she's nervous, waiting for the final pathology report to come back with the final staging.  When I had my surgery, I didn't realize this was something that needed worrying over.  I thought between the mammograms, biopsies, ultrasounds, PET/CT scan, bone scan, and MRI that the clinical staging would be on the money, and that the final report would confirm it.  I was wrong.  I went from a stage 2 to a stage 3c just like that.  When I told people I had breast cancer, I also told them I had a high likelihood of survival.  That was based on the clinical staging.  I don't think I've circled back to everyone to tell them it's now the toss of a coin.

Since I've learned about my cancer, my faith has not wavered.  I've known all along that I need God now more than ever.  Kevin said that some people in this situation have a crisis of faith to which I replied that I would be an idiot to pick a fight with God right now.  I have a friend who said that he used to believe in God, but now he believes he is either not real or that he is an absentee father.  I know that God is with me.  I also know that people don't always receive the healing they pray for.  If it were just me, I could pray, take this cup from me; nevertheless, not what I will, but what you will.  However, I'm like the preacher and the sermon that's been on my mind.  I have a hard time  accepting this, because in my estimation, some of the possible outcomes are not good enough for Midori.  She is too young, and I want her to have every advantage, including a mother.  That is the part that scares me to death and breaks my heart to think about.

So while God is drawing me close, I am keeping my distance a little sometimes.  But here's the thing, I know, and he knows, that I will be ready, in time,  to accept whatever happens.  I also know that he may not give me all the time I want, but he'll at least give enough time to make my peace.  This I know.  I hope to be here a long time, but even if I'm not I know that Midori will be okay.  I know that, in all things God works for the good of those who love him.  I know all of these things.  I'm just not quite ready to accept them all.  I think I am ready to ask God to help me get ready though.

Kevin and I were watching a tv show where one of the characters is a recovering addict, and they reference the serenity prayer.  God grant me the serenity to accept the things I can not change, the courage to change the things I can, and the wisdom to know the difference.  I told Kevin maybe, it's time I borrow this prayer.  He asked me if I'm giving up.  To which I say hell no.  I just can't go around refusing to accept what's happened to me and what could happen just because I don't think it's good enough.

Running on E

I've decided I'm anxious and a bit on edge.  This morning on the way to work my gas light went on.  This is really something very manageable, but it honestly made me want to scream.  I wondered to myself if the gas light would be good justification for a nervous breakdown.  I quickly decided against it, because I have too much work to do.  I wish I could say that this work had to do with something altruistic, charitable, some difference I've yet to make, or even something selfish related to something I want to for my family.  It's not.  It's regular old work as in get up, go to work, put forth as much energy as possible, do the best you can with what you have, rinse and repeat.  I'm grateful for work for the obvious reasons, but I guess the added benefit is that the demands help me to say no to the mental break which seems so tempting sometimes.

A number of people have called me strong.  I don't even know what this means.  Don't get me wrong.  I really appreciate the encouragement and support.  I just have a hard time taking any credit for doing the only things that can be done.  I have a hard time with seeing any of this as optional.  So no, I don't think I'm any stronger than anyone else with the same advantages and limitations.  I might be a little more practical than some, or maybe more pre-occupied with keeping the wheels on, or if I'm being totally self aware (which incidentally is over rated in my opinion), maybe I'm more controlling.  I would not say that any of this makes me strong.  If I thought for a minute that I could just buckle and that someone else would pick up the pieces, I would completely freak out the next time my gas tank is on empty.

Nickels and Dimes

One of the reasons I started this blog is that I find it theraputic.  As it turns out, between work, family, and cancer treatment, it seems I have little time / energy to devote to my mental health.  There, that is my excuse for becoming such an unreliable blogger.  Official policy and common sense prevent me from saying too much about work and / or family. In the way of cancer time / energy, here is what I have upcoming.  This Thursday, I have return post op with the surgeon.  Friday, I have the medical oncologist and chemo.  Next Wednesday I have a consultation with the radiation oncologist and physical therapy. Then three more Fridays with the medical oncologist /chemo combo.  Six weeks of radiation five days a week.  More PT, more surgery to address the positive surgical margins (can be done in conjunction with reconstruction), hormone therapy for 5 years.  Not sure how often and for what purposes I will meet with the medical oncologist post chemo, but I think it will be fairly regular for a time, try not to die.  At some point, I coined this as the "summer of chemo" despite the fact that it began in spring and here we are at the end of summer, and it's still going on and on.  September 30, will be the last round.  Obviously, the treatment has taken a toll on my body, but there's a good chance I'm starting to get depressed as well.  I'm so near the end of chemo that I don't see much value in looking into happy pills at this point.  I don't want to deal with more side effects. 

The non-depressed me might blog about yesterday and a sunny day at the pool with extended family.  Midori was so precious motoring around the pool with her floatie, shouting, "I'll get it!" when someone would throw the ball.  She was the first one in and half way across the deep end while I was still acclamating my toes.  Did I mention she's not yet three?  I haven't bothered to buy a swim prosthesis, and don't wear a wig in the pool.  I think I was quite brave for a crowd of 15 - 20 to saunter around in that condition.  Hell, I think I'm brave to saunter around in a swim suit period.  (Sunday, 8/28 someone else asked if I was pregnant.  She actually asked Midori if I was having a baby brother or sister.  Mom in law placed another hex, again involving the fleas of a thousand camels.  I should just place an announcement in the bulletin before the flea population gets entirely out of control.  I skipped church this last Sunday.)  Carter (Midori's cousin who's going on 4) asked me why I shaved my head.  Only one other person wanted to talk about my head.  My hair has started regrowing a tiny bit on the Taxol, and she was noticing that it's coming in blonde.  I think I look like a baby bird (or a baby hare krishna).  Kevin says a peach.  It's kind of cute in a completely hideous way.  Thank God no one tried to rub my head.  No one said a word about me having only one boob.  I managed to avoid the camera with the exception of two photos.  We left before the pie was served.  In all, it was a fun and memorable day.    

What Doesn't Kill Me Makes Me Thinner

Or in this case fatter.  I've gained about 13 pounds since my diagnosis which doesn't sound too bad until you consider that it's 10 percent of my total body weight.  My doctors say that it's common during chemotherapy to gain weight.  You eat differently.  You're not as active.  The steroid increases both your appetite and fluid retention.  They also say that you need a lot of calories for your healthy cells to recover each week.  So I'm told to eat guilt free for now.  No dieting.  I had to go buy some fat pants to have something to wear to work.  I haven't had a chance to get new pocketed bras, so I have that really attractive back fat thing going on.   The eyebrows that survived the adriamycin are now thinning on the taxol.  I've got about 6 eyelashes total which makes it really hard to give Midori butterfly kisses.

In other news, I had round nine of chemo today which is part of the reason I can't seem to sleep now.  The nurses had trouble getting the needle in my port today.  I guess the port is on the small side and lower than usual so they tend to have some issues with it.  It's basically in my breast tissue on my right/only breast, so breasts being wobbly, the port moves a bit.  You have to be willing to man handle it a little in order to hold it still and find your way to the center of it.  Some weeks it's a breeze, but don't count on it.  Eight needle sticks, three nurses, (including the nurse of last resort from a distant floor), a bunch of bloody gauze, and a bra with a golf ball size blood stain later, they had it in.  Being a staunch anti-needle, anti-site-of-blood person, it was less than a good time.  They apologized probably a dozen times to which I said it was really okay a dozen times.  I did learn a good laundry tip.  Hydrogen peroxide takes blood right out of clothing.  It's really true.

I go around with a brave face, but I'm always about two clicks away from bursting into tears, the exception being when I'm already crying.  I'm pleased I've managed to avoid crying when Midori is around.  It's funny how I put on this front for work/church/family/friends, and then I come on here and broadcast my feelings to the whole world, including work/church/family/friends/complete strangers.  Still the next time you see me and say, "so how are you doing?" I will tell you that I'm good.  In the same breath I will ask how you're doing.  If you don't take the opportunity to talk about yourself, if you probe for a more detailed report about my life, I will tell you that this course of chemo is a walk in the park compared to the last one.  That's usually enough to turn the conversation elsewhere.

I truly appreciate people's concern and especially their prayers.  It's not that I want to withdraw and shut people out.  It's just that if I open that door a crack, if I tell you it's a struggle, I will likely burst into tears, and that's generally not appropriate for a family get together/worship service/wedding/work elevator.  (I've seen what happens to people's careers when the openly demonstrate their personal struggles.)  So I have to take into account people's comfort, what's socially acceptable, what's going to protect my future and my family, and somehow balance that against a simultaneous need for company and solitude in my valley and my desire to be an authentic person.  It's exhausting.  So I medicate with ice cream.

Single Digits Baby!

My life has become a well practiced exercise in suck it up.  Thinking of changing my name to Buttercup.  I wonder if my dad would be proud of me if he were alive today, being the stoic bootstrap sort.  On the days I don't feel like taking two steps without resting in between, I get up, put on my make up and my wig and go to work, perform at a high level, smile and say, "I'm good, how are you doing?" a hundred times, come home, assemble dinner, play with Midori except for when I'm being a bad mom and let iPad or Nick Jr babysit, which when you mention it is a lot, (maybe I'll do the mommy guilt post next), and keep putting one foot in front of the other until I am finally able to go to bed and praise God that I've made it through another day.  And that's just the weekdays.  I think to myself, I wonder what life would be like if people could simply rest when tired.  

Kevin asked me last night, "are you okay"?  I understand the question, but I don't understand what the potential responses mean.  If I say yes, is it like standing in front of the elevator at work, exchanging a pleasantry?  Or does it mean that everything is fine and normal and obviously not scary?  If I say no, does that mean of course not, because I'm having cancer treatment and I'm human?  Or does it mean I'm in distress call 911?  I think I do better getting my head around an open ended question.

Speaking of cancer treatment and distress, yesterday I had my third weekly Taxol.  Only nine more to go.  The first one was a little intimidating.  They told me some people have an allergic reaction so they had me take 5 extra doses of the steroid I'm on the night before and 5 more the morning of.  Before they started the treatment they wheeled in the oxygen tank and the boldly marked anaphylaxis kit.  That gave me a warm and fuzzy feeling of confidence.  Turns out the nurse babysat me the whole time but didn't need to intervene with any life saving measures.  They took extra precautions with my second round of Taxol as well, but after the first two they say if it hasn't surfaced by now, it's unlikely that I will have an allergic reaction.  The great news is that Taxol is a walk in the park compared to Adriamycin.  I don't feel nearly as sick for nearly as long.  I have some minor gastro-interference.  It leaves a bad taste in my mouth.  There's some minor neuropathy in my hands.  Fatigue is the biggest side effect at this point.  Nine more weeks of cumulative fatigue.  Next month is Kevin's birthday, our wedding anniversary, Kevin's dad's 60th birthday, Lanae's birthday, visit from my Florida Aunt and Uncle, Daniel's wedding, family vacation, not to mention anything about August work deliverables (which I most likely would not mention publicly even if there wasn't a policy expressly prohibiting it).  Should be interesting.

Don't Worry

Matthew 6:34 


Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.


I had treatment number four of the adriamycin and cytoxin on Friday.  People tell me it doesn't get any worse than this.  In two weeks I start weekly taxol, and that is supposed to be a lot easier.  I'm pretty fatigued right now, but based on prior experience, I expect to be at my lowest over the next three days.  While I live in anticipation of that delight, I just continue to try to live as fully as I can.


For the prior treatments, we've had the nanny look after Midori overnight after my infusion.  It's been so helpful, because the infusion process is draining, the drugs they give me to prevent a reaction make me drowsy, and it gives me a day to leach the toxins out as a precaution before being in contact with her again.  This week, Friday also coincided with the nanny's annual July 4th weekend family camping trip.  Rather than disrupt their tradition or try to keep Midori after my chemo, we agreed to send Midori along.  It makes me sad that we're not together on the holiday and that my baby is on her first camping trip without me, but my life has in many ways become an exercise in choosing from among the least ideal options.  I can't wait to see her tomorrow!


On the bright side, Kevin and I got to spend some time together, and I was able to conserve my energy more than had Midori been with us. Perhaps it will help me as I head into the downward slide the next few days.  It was actually a pretty full weekend.  Friday night we went to a movie which might not be something I'd be up for post chemo, but we went to a different kind of theater where you sit in a recliner with a blanket and a pillow, and a waiter comes to you to serve you.  I basically just laid there in the same fashion I would have at home, but since there was a big screen and a waiter involved, I think it qualifies as date night.  Saturday, we got to visit briefly with some friends we haven't seen in a long time on our way to a day long wedding celebration.  The wedding was beautiful.  The couple is made for each other, and I think the message was an uplifting reminder to all married couples.  Sunday, we went to church and sale shopping with family.  Today we went to Kevin's mom's for family dinner to celebrate the fourth.  I was surely limited at each gathering this weekend.  I had to sit more than be active.  I had to cut things short, but I tried as best I could to be present and part of life.


My hope is that by participating in life's gatherings yet conserving my energy, I struck the right balance to be quite productive at work this week even as I slide into the valley.  I have so much on my plate.  In the business world, hope is not a strategy, but if you ask the famous tax collector, he'll tell you to let tomorrow worry about tomorrow.  So that's what I'm going to do.  I'm going to go sleep in peace and let tomorrow worry about itself.  I hope.  

This Might Be the Week I Develop an Eating Disorder

I had treatment number three last Friday.  It was slightly unusual in that they had problems with my port.  The first nurse who tried to insert the I.V. tried and failed twice and apparently saw enough blood to inspire her to give up up and call in reinforcements.  I guess some nurses are just better at it than others.  Thank God I always opt for the lidocaine before they start working the big needle.  (I can't believe I just said always like this is the new norm already.)  Once they got the needle in, they couldn't draw blood from the port.  It's essential that they be able to put things in the port as well as get a blood return from the port.  Something about the circulation and adriamycin not sitting around destroying all of my tissues and what not.  They concluded the port was clogged.  The solution was to inject my port with some enzyme that they compared to Draino (which would not actually surprise me at this point).  Then I sat and marinated for an hour and waited for the clog to dissolve.  I guess the point is don't be in any hurry when you're scheduled for an infusion.  The rest went as expected.

Sometime recently, I saw my physical therapist.  I'm making some good progress with my range of motion in my left arm.  The thing I love best about my PT is that she does not ask me about my mood.  I don't know how many doctors have asked me to rate my mood on a scale from one to ten or indicate my level of distress on a questionnaire according to smiley face, flat face, frowny face, etc.  I recognize there is a reason to ask, but I just find it so exasperating.  I want to ask, "am I in the right place?".  "You do know I have cancer right?"  It makes me want to scream, scratch out the faces, draw a picture of my middle finger, tear the paper to shreds, burn it, and stomp up and down on the ashes until I collapse into a pile of hysterical laughter.  Instead, I reply, "my mood is stable".

I was at church Sunday when a woman asked me if I'm pregnant.  If that doesn't take the cake.  Can't a girl have a little post chemo bloating without her family planning coming into question?  At least we know I'm heeding my oncologist's orders to keep my weight up during treatment.  I continue to eat despite the fact I have no appetite.  I'm also taking twice the recommended daily allowance of both Prilosec and laxatives per my oncologist.  (Sounds like the right foundation for that eating disorder I mentioned.)  In case anyone is wondering, I am under strict orders to not get pregnant.  The radiation oncologist (different from the medical oncologist previously referred to as "oncologist") told me that it makes everyone look bad if I have a baby with two heads.  Then there is the fact that chemo has sent me into menopause.  Assuming I were to come out of menopause after treatment, which is a big maybe, I have to take Tamoxifen for five years after my treatment which is also not compatible with pregnancy.  By then I should be around 46.  So for the record, there should be no reason to EVER ask me if I am pregnant.  For that matter, there should be no reason to ask any woman if she is pregnant unless there is incontrovertible evidence such as the baby is crowning.  On the bright side my mother-in-law put a hex on the woman involving the fleas of a thousand camels, nether regions, and short arms.  That made me feel considerably better, elevating my mood to a double smiley face.  

Chemo Brain, What's in a Name, and Other Random Thoughts

I was warned about "chemo brain", but so far it's not what I had expected. I was thinking perhaps I would misplace my keys or not be able to recall someone's name.  Since these are things I do already, my plan was to live happily in denial and simply not notice any cognitive impairment.  My keys are in my purse, my name is Paula, and I find myself forgetting things I would not have thought possible to forget.  For example, last night I had to check three different cupboards to find my drinking glasses (which have been in the same place since we bought this house last October).  One of my friends suggested the next time this happens, I forget the glass and go straight for the bottle.  I think this is sound advice.

I was thinking about the names Adriamycin and Cytoxan.  Adriamycin, Adria for short, sounds like a pretty name for an interesting woman you might meet somewhere like hot yoga.  It doesn't sound like something that causes you to cry red tears or that may cause heart failure and/or leukemia.  Cytoxan sounds like something out of a season of 24. Former CTU agent, Jack Bauer, is closing in on a terrorist plot to release a lethal dose of the biologic agent Cytoxan in the NY subway system.  I wonder how it is they come up with these drug names.

I went to see my Psycho-oncologist yesterday.  He's probably an Onco-psychiatrist actually, but I think the other has a nicer ring.  Basically, he's a guy with multiple advanced degrees who is supposed to help me manage my fatigue.  He has instructed me to do moderate exercise each day and apart from that to employ energy conserving strategies such as organizing the things I need on one floor of my home or sitting to do things if possible.  He recommends doing the same exercise for the same amount of time at the same time each day (even if it requires scraping myself off the floor to do so). Because he has multiple advanced degrees, he says things such as "stimulating a biochemical pathway to create a vector."  Yesterday he told me that there is a subset of patients who after treatment continue to experience fatigue permenantly.  He said it's because they continue to "push themselves beyond their biologic capacity".  He said because of the downward spiral of fatigue they get in, they may push themselves beyond their biologic capacity simply by resuming their daily activities.  INSERT SCREECHING TIRE SOUND HERE.  What??!  Resuming their daily activities?  Oh my gosh, I forgot to set aside some of my daily activities.  I immediately thought, so far no one has given me permission to set aside any of my daily activities.  I also immediately realized that no one is going to.  I need to give myself that permission and figure out how to better orchestrate the setting aside where possible.  The goal is that I will recover from treatment more quickly.  My hope is that I will spend less time on the floor during treatment. 

Round Two

My hair started falling out in droves June 1, twelve days after my first treatment.  Kevin shaved my head June 2.  It's better to just shave it.  There's just something very disturbing about watching it fall out.  We did it with Midori there in the hopes that she would see the transition and be more understanding of the change.  She asked me for a couple of days, "is mama a boy now?".  "Is mama pretending to be a boy now?".  Other than some gender assignment questions she seems unphased.  I've received a lot of compliments on both my bald head and my wig.  I feel like I'm gradually turning into a plastic person.  Fake breast.  Fake hair.  My lashes are getting patchy.  Perhaps, I'll go for false lashes as a tribute to my silicon self. 

The Tuesday after my second treatment, I spent the morning on the bathroom floor in the fetal position.  I called the oncologist's service (from the floor).  When he called me back, I explained that my stomach was cramping/burning.  It literally felt like a five alarm fire in my stomach.  He told me to take some Prilosec which helped tremendously.  I spent most of the day laying in bed or partially propped up in bed.  Other than Tuesday, I've spent a good portion of each day up and about. 

I spent most of last night awake.  One of the anti-nausea meds that I take at bedtime for several days following the infusion is also a sleeping pill.  It wasn't in the regimen for last night.  I wonder if I'm developing a dependency.  I could call the oncologist, and I'm sure he would tell me about some more pills I can take to combat the side effects of the pills that combat the side effects.  I have become a walking pharmacy.  The worst of round two seems to be over although the very thought of another treatment makes me queasy.

In other news, I've lost my taste for chocolate and coffee.  Talk about adding insult to injury.  I find myself craving raw fruits and vegetables.  I have never craved a carrot stick in my life.  Let's revisit.  Fake hair, fake breast, fake lashes, subsisting on carrots.  Sounds more like a model than a cancer patient.  Ha!

Muslin

I think if anyone who is 40 were to sit down and think objectively about it, they would recognize that life on earth has a beginning, a middle, and an end.  Being realistic, they would agree that their life is likely closer to the middle or the end than the beginning.  Having stage 3 cancer certainly brings this fact into focus.  I was always aware that life can end at any hour, but being handed the garment of mortality and asked to try it on, I can see that it looks much different up close.  On the rack, it barely captures your notice.  It's more like a dress maker's cheap muslin that they use to fashion a pattern out of before they cut the expensive fabric.  When you try it on, it's something else.  It's costly and delicate and too rare and exquisite to replace.  Well, I've tried it on, and I've decided to leave it for another day.  I like my muslin.  It's quick, and it's light.  It doesn't hide my flaws, and it doesn't matter if I step on the hem while I'm dancing with Midori.  It's a good week.  I'm feeling well.  I'm hoping the off treatment weeks will continue to be kind to me.

The Spirit is Willing, but the Flesh is Weak

I had my first round of chemo on Friday which involves being infused with a bunch of stuff over several  hours.  There are a bunch of drugs they give you so you can tolerate the chemo.  The actual chemo drugs for the first four rounds are Adriamycin and Cytoxan which my oncologist describes as the "boot camp of chemo".  The Adriamycin is the more intimidating of the two.  Rather than let it drip like all of the other stuff, they bring it in a giant syringe and sit with you while they push it to make sure you don't have a heart attack.  It's red, and it makes your urine/sweat/tears red. The nurse didn't find a MUGA (?) heart scan in my  records so she was reluctant to give it to me.  We had to wait until she got hold of my doctor and received his confidence that my heart could handle it.  The anti-nausea drugs they give you post chemo work well so I only felt a general queasiness and was able to keep eating each day (though I have no appetite).  The biggest side effect so far is that everything, including breathing, is simply exhausting.

I went back to work yesterday.  It was not easy.  I tried to  go today.  I got up and laid around the shower floor long enough to wash myself.  I tried for 2 hours total to get ready between several rest breaks until I gave up.  I slept until 5pm.  I had a bunch of weird nightmares.  I'm feeling quite a bit better at the moment (able to sit upright in bed and type) so I expect tomorrow to go better.  Kevin is at rehearsal for  the Faure Requiem. His  school is doing it with orchestra and combined choruses the evening after round two of chemo.  It's been in the plan since before the cancer.  He said, it's too bad, because I've done it before and had mentioned I wanted to sing it.  It seems funny the things people think about who are able to do the things that people do.  It's funny how quickly you become someone who doesn't know what you'll be able to do tomorrow.

Crazy is the New Normal

Monday morning about 2am Kevin gets me out of bed with severe chest pain, can hardly breathe, move, talk.  I call 911.  The parmamedics come and take Kevin to Overlake ER with me following behind.  Thank God Shelley is there to stay with Midori while we take off in wee hours.  It turns out Kevin has gall stones.  They admit him and get him on the surgery schedule for Monday afternoon.  They expect him to go home that evening or more likely Tuesday morning.  Once he's got his pain under control and is in a room, I decide to drive home (before I fall asleep) and pack a bag.  The surgery went fine.  The doctor said his gall bladder was massively inflamed so they want to keep him overnight on antibiotics and monitor his liver function.

Later blood tests reveal his bilirubin is high which indicates an issue with his liver most likely, because a stone was left behind and is interfering with the entrance to the liver.  He will need another procedure to go in and see what the problem is and hopefully remove the obstruction which is hopefully a gall stone.  The earliest they can get him on the schedule is 3:30 Wednesday.  They say he might be able to go home the same day.  Being familiar with the number of hours in a day, again I am skeptical that given the start time that will actually happen.  The procedure involves putting a scope down his esophagus.  They described it like a colonoscopy but in reverse.

On the heels of getting this news, we get a call from Kevin's brother that his mother is in an ambulance on her way to Overlake with chest pain.  I was able to take Kevin downstairs in a wheel chair to sit with her.  Long story short, after several hours of testing, they determine it's most likely not a heart attack.  There are a couple of things the doctor suspects it might be so they and release her with instructions to follow up with the cardiologist and gastroenterologist.

I leave Kevin (who is now yellow) to take Kevin's mom to her car.  In the time I'm away they realize the I.V. has been displaced and the fluid has just been collecting in his right arm.  The I.V. tech is on the way to move the I.V.  

Reasons I am starting to wonder if I am caught in an M. Night Shyamalan movie: 

Kevin is yellow.

Two nurses come to Kevin's room today and say they are going to every room in the hospital doing a skin study and would it be okay for them to "look at his bottom".  They look for like three seconds.  After they leave, I say I think the study is really to determine how many people will consent to showing their bottoms.

Kevin's mom rides the ambulance all the way from work to the hospital.  When they are nearing the entrance, some lady is honking.  It turns out her purse rode the bumper of the ambulance and survived all the way from work, on the freeway, to the hospital.

When I get back to the hospital, because of the fluid collection, it looks like Kevin's right bicep is twice the size of his left bicep.  (Remember that guy in Lady of the Lake that only works out one side of his body?)

I've been going around since Monday wee hours without my prosthetic.  Retail price is $330.  I need to be careful with it, because insurance will not cover a replacement.  Need to store it in a special case when I'm not wearing it.  Didn't have enough space in the wheeled suitcase for the storage case, and I don't have enough strength to tote around several bags.  I did leave it in the car just in case. (Just in case of what I'm not sure).  It's amazing what level of bizarre becomes normal in a short time.

Happy Mother's Day

With Mother's Day just around the corner, I'm thinking of some of the women in my life that I love.

Lanae, you don't have children, and your mom is in heaven, but you collect wanderers and orphans to mother.  You are fiercely loyal to those you choose as family.  You suffer long with those you love, and you lift them up.  You nurse them until they can fly, and if that's never you keep their vigil just the same.  You have the fight and the hope of the frontier in your blood.  

Shelley, although you live on the other side of the country, our lives have run in parallel in many ways for many years.  We were born a week apart.  We were engaged and married in a similar time frame.  We were expecting our first children at the same time at the age of 37.  When our children were born a week apart from each other, my joy was complete.  I'm so grateful you're here now giving me the gift of simply being present.  There is a lot we could say to each other, but we don't actually need words to uphold the bond of our friendship nor to span the distance between us.  Although a lot of the biggest things in our lives have tended to run in tandem with each other, I'm so relieved that you are only my companion on this journey rather than having to fight this fight yourself.  I don't know how to describe my relief in a way that is not just an enormous understatement.  It makes me weep to think about how grateful I am.  

Kara, you are probably the best mom there is.  I've known you since I was six and you were five.  I neglected my friendship with you when I was going through a dark time.  I basically let it lapse when you were expecting your second child.  It had a lot to do with my own depression, broken relationship, and grief at the time, because I believed I would likely not be blessed with a child.  I'm so grateful you are part of my life again.  The fact that we have reconnected is truly one of the bright spots of this disease.  

Tina, you were such an important part of my childhood, and I was so happy to reconnect with you on facebook.  It was a delight to attend your fortieth birthday party while you were here.  I asked you to fill me in on your daily life as a reprieve from cancer talk, and I have been so blessed with your correspondence from afar.  It is a joy to hear about your family.  You have been so faithful in caring for me in this way, and you can't know what a difference it makes to me.

Alina, you literally came across the world to be with me when I needed you the most.  You put your life on hold to fetch and carry and fold laundry and feed me and take Midori to the potty and so much more.  Thank you so much for your sacrifice, practical support, prayer, and commitment to "shop for the cure". May God reward you richly.  

Alma, you are such a strong and Godly woman.  I stand in awe to see how you manage life's circumstances with love, faith, and grace.  You are beautiful and amazing.  I hope some of that will rub off on me.  

Anita, you are so fiesty and full of life and have such a heart for your grandbabies.   I think if I had to think of a way to describe your spirit I would say, life is short so don't beat around the bush.  If you love someone, tell em, and if you can't stand someone give em the finger.  (BTW, I'm glad I'm on the the loved list!)  

Amber, I'm so proud of the wife and mother you've become even though you started out so young.  I've told you this before, but I'll say it again.  I'm supposed to be the older sister and example, but I look up to you in so many ways.  

Then of course there is my mom.  She would sooner sprout a third hand than actually log onto blogspot, but what I'm thinking about her is that she suffered a lot of hardships in her life, but she did the best she could with what she knew.  Although she did not always demonstrate it well, I know she loves me.  She'll be 83 this summer.  I'm so grateful that she's lived to get to know her granddaughter.    

There are women I work with (and wives of men I work with) who balance work, family, and unfortunately breast cancer in some cases.   They have visited, sent gifts, cards, thoughts, prayers, food, beauty tips, etc.  I miss you gals.

There are all the women saints of the church who have also sent cards, gifts, food, prayers, advice, and encouragement without whom my days would no doubt be darker. 

I love you all and many others very much, and wish you a happy Mother's Day.  I know this occasion means something different to each of you.  To me, every day that I have life is Mother's Day, Fourth of July, Easter, and New Year's Eve rolled into one.

(p.s. Guys, I love you too, and am grateful for your love, help, and presence.  Let's make a date for me to sing your praises in June.)

Reasonable Looking

I've had a few fun days with my best friend from Florida.  She took a side trip up north to see her mom and will be back tomorrow.  Midori likes playing with Griffin who is a week younger than she is.  However, she needs to work on her sharing skills.  She's been talking in her sleep saying, "I don't want to share with Griffin!"  I met with the surgeon yesterday.  He said the wound is healing nicely.  I can start easing into some of my usual activity.  He said I'm not likely to hurt the wound, but I am likely to hurt myself if I over do it.  He advised me to "use common sense."  Midori spent the night with the nanny.  I can't wait until she gets home so I can pick her up, carry her, etc.  I'm not sure how commonly sensible I will be with her given that the surgeon gave me close to what I'm going to interpret as a green light.  I just miss carrying her, and she will see it as a sign that I am better if I can pick her up.  Still no bating or swimming for the full 6 weeks post surgery.  He referred me to a physical therapy program specifically for those undergoing cancer treatment.  It will address my frozen shoulder, lymphedema prevention, and other pain resulting from future treatment.  The physical therapy in this program is directed by a physician.  I have my first two appointments (one with the doc, and one with the PT) scheduled for 5/19.  The surgeon wants to see me again in four months.  The highlight of yesterday was getting my prosthetic breast.  It's much more reasonable looking and feeling than the cotton thing you get to wear following surgery.  Apparently, I'm about a size 7L.  Speaking of reasonable looking, I just ordered a book for my Kindle called, "Beauty Pearls for Chemo Girls".  One of my friends at work sent me an article about it, and it seems promising.  (Thanks T.)  Gonna go read it and lay around.  Happy Mothers Day!

Fabulous

I enjoyed watching part of the royal wedding while I got dressed this morning.  As expected, everything was grand and lovely.  I enjoyed the costumes, glimpsing Elton John, and the sacred music and text.  The real highlight of my day (so far) was getting my drain removed.  It turns out I really prefer not to have surgical tubing in my chest wall, dangling out of my chest, hanging on by a suture, culminating in a grenade size plastic bulb that needs to be regularly emptied.  I was instructed to continue restricting use of my left arm as well as continuing to avoid lifting more than ten pounds.  Kevin & I enjoyed chinese food for lunch with a couple of my work friends.  (Really I had lunch with a couple of work friends, and after the bill was paid Kevin showed up and ate what I had left on my plate.)  Then we went to Scott's Dairy Freeze in North Bend for soft serve. I had chocolate. Kevin had swirl.  This was followed by briefly (yet productively) shopping the outlets.  On the way home, we stopped at Krispy Kreme in Issaquah for soft serve.  I had chocolate.  Kevin had swirl.  We have concluded that Krispy Kreme is better than Scott's Dairy Freeze for soft serve (though Scott's is not bad).  Right now there is a casserole in the oven courtesy of Aunt Barb.  I invited a couple over for dinner.  I figure Kevin might enjoy taking a break from being cancer husband for a normal night of socializing and playing cribbage with his guy friend.  

Two Tenths of a Millimeter

I fell off the grid for a few days as I was in a narcotic haze.  I am glad to report I am off the narcotic.  I feel rather like I've been soundly beat with a sack of oranges, but it's preferable to the nausea, blurry vision, lack of appetite, nightmares, and general fog. 

Last Thursday I saw the surgeon.  He went over the final pathology with me.  The tumor was 2.7 in it's greatest dimension.  The DCIS was 5.2 cm.  He said there were some close margins.  According to the pathology report, 1 mm margin for invasive and .2mm margin for DCIS on the skin side.  The team of doctors reviewed my case and all agreed that I need to be re-excised to remove some additional skin.  They also agree that rather than delay chemo, the additional tissue can be removed at the time of reconstruction.  I'm not certain I will still have the stamina to have reconstruction by the time I get that far, but at this point I'm committed to at least one additional surgery.

I also met with the medical oncologist.  I think I mentioned earlier that 14 of the 19 lymph nodes they removed were cancerous.  The oncologist told me that at one time anyone with my condition would have a recurrance, but with the advances in chemotherapy we have a good chance of beating it.  I asked him what a "good chance" is to which he replied maybe 50 or 60 percent.  (On the bright side if you're in the unfortunate 40 or 50 percent and have a recurrance, it's not necesarrily lost.  You go after it again.)  Regardless keep praying.

Right now one of my goals is to get my surgical drain removed.  I expect I'll be a lot more comfortable once I get this tubing out of my chest wall / armpit.  I'm still waiting until I'm draining less than 30 ccs per day.  Just a bit north of 30 today.  I think I'm getting close.

Despite everything, my spirits are high.  Yesterday was truly a sunny spring day.  Between the weather, the love of my family and friends, and the resurrection, it's impossible to feel gloomy.

My advice for today.  Kiss someone with passion, and don't forget there's more than one way to skin a cat.

Be Thou My Vision

Yesterday was rocky without the narcotics.  Eventually, the doc called in a new prescription for a different anti-nausea med, compazine.  Kevin picked it up on his way home from work so I was able to start playing catch up with the pain management by evening.  The scopolamine patches cost me about $25 for two.  Each patch is supposed to last 72 hours.  The compazine pills are every 6-8 hours, and a supply of 20 costs me 40 cents.  I think the patch was ideal for the actual surgery since it keeps self delivering through out the process.  Otherwise, the pill seems a better way to go.  One of the side effects of the compazine is blurred vision.  This morning I experienced some improvement in my close vision, but it's now blurry again.  I've decided, based on yesterday's experience that my preference is going to be blurred vision.

In general, I'm feeling a lot of love coming my way.  Yesterday my mom came over and kept vigil with me while I napped and my brother did yard work.  My sister in law is here from Germany sacrificing her spring break to help us out.  Kevin's mom came over yesterday for a visit in the afternoon.  My brother in law, his fiancee, and their baby came over in the evening.  The nanny and her family continue to be a huge support.  People are praying and sending food, cards, flowers, gifts, and virtual hugs and kisses.  Kevin is such an amazing husband and father.  He is so patient and supportive of my changing needs.  I have a girlfriend bringing lunch today.  I've had a visit from one coworker and expect a couple more to drop by Friday.  This morning I thought about being depressed for a moment, but then Midori ushered me into the closet under the stairs to play.  I think it's impossible to be depressed with her nearby.  She just has such a brightness about her. 

 
Here's the hymn I have on my heart today.

Be Thou my Vision, O Lord of my heart;
Naught be all else to me, save that Thou art.
Thou my best Thought, by day or by night,
Waking or sleeping, Thy presence my light.

Be Thou my Wisdom, and Thou my true Word;
I ever with Thee and Thou with me, Lord;
Thou my great Father, I Thy true son;
Thou in me dwelling, and I with Thee one.

Be Thou my battle Shield, Sword for the fight;
Be Thou my Dignity, Thou my Delight;
Thou my soul’s Shelter, Thou my high Tower:
Raise Thou me heavenward, O Power of my power.

Riches I heed not, nor man’s empty praise,
Thou mine Inheritance, now and always:
Thou and Thou only, first in my heart,
High King of Heaven, my Treasure Thou art.

High King of Heaven, my victory won,
May I reach Heaven’s joys, O bright Heaven’s Sun!
Heart of my own heart, whatever befall,
Still be my Vision, O Ruler of all.

If It's Not One Thing...

I woke up this morning having some trouble with my glasses.  I decided to clean them.  What a novel idea?  Only it didn't help.  I then tried replacing my glasses with my contacts.  Still no better.  So I decided the blurred vision must be a side effect of one of the medications I'm taking.  Sure enough.  It's the most common side effect of the scopolamine patch.  I am continuing to use the anti-nausea patch so that I can tolerate the pain pills.  So now I'm in a bit of a pickle.  I have a call into the doctor.  In general, I've decided that cancer is not about making good choices.  It's an exercise in choosing the least bad option among all the crappy choices.

I think in my last post or so I mentioned that I was less creeped out by the surgery than I expected.  Well that was before I removed the surgical dressing.  It's pretty crazy looking.  It's what they call a skin sparing mastectomy which means that they conserve as much skin as they can in order to support future reconstruction.  Since skin is elastic, the extra retracts so it's not just hanging there.  Anyway, imagine my breast swallowed a very tart lemon and retreated into my chest wall making a sour pucker on it's way in.  It also doesn't help that when we were in the hospital having the hematoma problem, the resident marked the area so we could see if it was continuing to grow or not.  Instead of using a surgical pen, he used a sharpie permanent marker.  So, above the weird lemon boob, there is a black elipse that doesn't want to wash off  It's pretty distinctive to say the least.

In other matters, Alina and I have decided that instead of the three day walk, we will make an annual "shop for the cure" trip.  She very dutifully  pushed me around in a wheel chair throughout the entire Southcenter mall Sunday while Kevin pushed Midori around in her stroller.

I've now removed the patch.  Gonna see what I can do with alternating ibuprofen and tylenol for pain.  Hopefully, my vision will return soon?

The A B C's

It's just me, Kevin.

Here's part C of my blogging for Paula.  It's early Tuesday morning and we've been home for about 3 days now.  We've had so many people offer to help in many ways.  So much so that it can be a bit overwhelming at times - but we're not complaining!  We just don't really know what we need yet.  Kind of a crazy statement, I know, but bare with us.  I'm sure we'll think of something.  :-)  [By the way, thanks so much to those church friends and coworkers that are making meals for us.  It is greatly appreciated!]

Alina:  My sister has come from Germany to spend her spring break helping Paula.  She came in on Friday night and is staying until next Tuesday.  It's been a great comfort to know that someone is here for her during this first week after the surgery as I have to return to work.  Thanks, Sis!!

Bath time:   One of the many things that Paula can't do at this point is submerge the surgical wound in water.  So, yes to showers, but no swimming or baths.  So, that means that I am now responsible for bathing Midori.  We had our first bath together on Sunday night.  Everything went fine, but there was an amusing ending to the experience.  In the past couple of months, Midori has been noticing differences between her body and ours.  Last month she said, "Momma has hair on her butt?!"  (To her, everything below the waist qualifies as "butt," because during potty training we tell her that we need to "wipe her butt," which of course includes the front, as well.)  In the same vein, while drying off after our first bath, she looked at me, then turned to Paula and said, "Daddy has a tail?!"  I think some trunks are in order next time.

Chemotherapy:  Right now Paula is in a holding (and healing) pattern.  The tube that is attached to the mastectomy site is helping to drain that wound.  Gross, I know.  But, the good part about it is that it helps us to know that she is actually healing from the procedure.  Once the drainage is minimal, they'll remove the tube and can begin the next stages of the treatment:  Chemotherapy.  So, in about two to three weeks, Paula will begin the first of two rounds of chemo.  The first round is eight weeks long and is apparently the more debilitating of the two.  The injections are so intense that it takes two full weeks before your body is prepared to have another injection.  And, that may even require the help of blood count booster shots and the like.  :-/  Not fun.  Once those eight weeks are over, we then proceed directly into the second round of chemo.  We have been told that these drugs are "much easier to handle," although they come every week for twelve weeks, so I have my doubts about how much easier it will actually be.  (Keep prayin', y'all!)  So, a total of about five months of chemo before moving on.

A, B or C ?:  The hardest and most nerve-wracking part about the post-surgery news is the upgraded staging of the cancer.  As Paula mentioned in her last post, she was initially rated as Stage II B.  This feel into the "we caught it early" category.  They did tell us that they wouldn't know for sure until they took the tumor out, measured it, and counted in affected lymph nodes, but they seemed pretty sure we were in good shape.  However, the surgeon came into the hospital room on Thursday night and told us that 14 out of 19 lymph nodes were affected and the tumor was approximately 3cm.  This put Paula directly into Stage III and in the "more advanced" category.  (Stage II requires a tumor less that 2cm and fewer than 9 affected nodes.)  Stage III has three possible sub-categories:  A, B or C.  Based on the pathology of the tumor and lymph nodes, the surgeon told us she feel into the "III B" category.  After he left the room, Paula immediately went to look up info of Stage III B on "cancer.org."  In doing so, she found that "III B" has the most undesirable mortality rates of the bunch, but also that, based on the info he told us, she actually falls into the "III C" group.  Now, we were both incredibly tired and one of us was on "happy drugs" at the time, so it was quite possible that we didn't clearly remember all of the details he told us.  So, we asked the oncologist on Friday afternoon.  He read the pathology and, of course, said that she falls into group "III A."  Ugh!  Good thing God is in control!

The ABC's:  The best part about coming home was seeing Midori.  She actually grew up a little while we were gone.  She is not using her "B and blankey" anymore (read: pacifier and blanket).  She's getting to be such a big girl.  We missed her so much!  I especially missed her singing - "Old MacDonald" and the "ABC's" are her favorites.  While I hope Daddy and his tail don't make it onto the farm, I do appreciate the music.  At least those ABC's are predictable.

Does This Boob Make My Butt Look Fat?

I'm still in the hospital.  My spirits are okay.  The chest wall where they performed the mastectomy is healing well.  The chest tube continues to be a source of pain.  My pain management right now consists of either taking the narcotics that make me vomit (despite the scopolamine patch), taking the narcotics that make me itch all over in combination with benadryl which stays the itching a little and puts me to sleep,  or taking a cocktail of pills (tylenol, pill to address nerve pain, and muscle relaxor)  This third one seems to be less effective in terms or pain management, and you can only do it every eight hours.  Anyway, you can imagine I had a restless night.

Kevin already filled you in on the chest tube insertion, but having experienced it, I thought I would elaborate a little.  First of all this all happened in the middle of the night so I got the thoracic resident.  He had the nurses give me some drugs via IV.  He explained that these drugs would not numb anything, but they would serve two functions.  One, they would help me relax.  Two they would make it so I would not remember how much it hurt.  Before those drugs really kicked in, he began the procedure by numbing my skin with Lidocane.  The incision he made in my skin to introduce the tube did not hurt.  The insertion of the tube HURT LIKE A BITCH and has been a source of aggravation ever since.  The chest tube is hooked up to a suction device which is hooked up to the wall, so it means I can't travel far.  I have to use an adult potty chair at my bedside which is pretty charming.  Once I see the thoracic team and have x-rays I'm hoping they will change the device to a water seal.  I don't know exactly what this means.  I just know that if I'm not on suction that I can carry the water seal device and probably be un-hooked from the rest of my stuff long enough to go to the real bathroom.  I'll be glad when I'm done with the chest tube; however, I expect it's going to be painful when they pull it out.  I would also like to shower, but obviously that is out of the question.

We spoke to the surgeon last night.  Based on the surgery and pathologist review of the actual tissue, my cancer staging is worse than we expected.  I think he said the tumor was a few centimeters, there were 5 centimeters of DCIS, and at least 10 lymph nodes involved.  I need to review this with him again when I'm not so hopped up on narcotics, and see the printed report, but I think this puts me in the 3C stage.  Stage 3 is not considered early stage cancer.  You can google the survival rates for this stage if you're interested.  The surgeon said he was able to get clean margins, but a couple were close.

My proportions are obviously different now then they were, but I'm finding I'm not really as creeped out as I expected I might be.  I'm signing off now to eat something so I can take another pain pill.  

Two For the Price of One (2-4-1)

It's just me, Kevin.  Again.

I only expected to make yesterday's post, but Paula started today's and lost interest right away.  It's been a hectic night heading into a hectic day.  So, here I am again.  (2-4-1)

Last night we had Paula's second and (sorta) unexpected surgical procedure of the day.  (2-4-1)  It was one of those things that the doctor mentions "might happen" in passing, but assures you that he/she doesn't expect to have to worry about it.  Unluckily, Paula did have to worry about it.  That procedure happened right in front of me in the room.  While this procedure was probably much less painful than the initial mastectomy, it was much more traumatic because, while she was knocked out for the initial surgery, this only involved local anesthetic - and not enough of it, by the sounds Paula was making.  :-(

After the first surgery, she was restricted to clear liquids only.  The fact that she needed the second one meant she was back on NPO - a Latin abbreviation for nil per os, which translated means nothing by mouth. (Yes, I'm that nerdy.)  Anyway, because of this, she only had a small window where she ate a cup of jello and some diet ginger ale.  Otherwise she was food- and drink-less for about 36 hours.  Yuck.  But, on the bright side, I got to order off the patient menu for free!  (2-4-1)

God has played a huge role in our lives - and he showed up again last night.  Sometime during the middle of the night, Paula rolled over and knocked a tube loose.  Because she was up anyway, she checked the mastectomy site and noticed some significant swelling.  The nurse saw it and said, "I've got to get the doctor."  The resident came in and said, "I've got to call the surgeon."  Apparently, the surgeon said that they'll need to "go back in" to clear out what he believed was a hematoma - a large blood clot - that was building up.  It was concerning because the "flap" of skin that covered the mastectomy sight could be affected by the lack of blood flow created by the clotting.  God came in here and directed the first doctor.  He said, "I could call the on-call team of people who don't do this regularly, or we could wait until morning when the breast-specialists are back at the hospital." He elected to wait and ordered a 5-pound sandbag to be put on for a few hours.  He checked on her every hour after that until morning. (Remember, this was the middle of the night.)  When the surgeon arrived at 6:45 am, the swelling was all gone and the clot was vacating the premises!  No third procedure needed!  (still only 2-4-1)  Thank you, Jesus!

So, all of this means that we'll probably be here until Friday.  Our original plan was over one night - two days total.  But with all the other stuff, we'll be here about four days.  Crazy!  (4-4-2... which reduces down to 2-4-1)  Yes, I'm that nerdy!

It's just me, Kevin

So, I'm writing this while sitting here in with Paula in her room about three hours after her procedure.  (Procedure - sounds so antiseptic, doesn't it?  I guess it fits this setting, though.)  Anyway, here's how the day has unravelled so far:

5:30 am - Wake-up for the Hibiclens shower.  Paula hits the snooze.  Can't blame her.

5:45 am - Paula hugs Midori for quite a while.  Won't see her until Friday.  Hoping life won't be changed too much for her, but only time will tell. (Midori has been extra sensitive to the situation and asks Paula on a daily basis if "the doctor fixed Mama's boob?!" or if "the owie is swimming in Mama's boob?!")

5:52 am - Paula gets up for the "special soap" shower and I hit my own snooze button.

6:30 am - I'm actually on time for once!  We're heading out of the house and on our way!

7:00 am - After being flipped off by a lady for taking too long to back into a parking space, we head inside the hospital. (I suspect she was a nurse who was late for work. Hopefully not ours.)

7:05 am - Hurry-up...

7:20 am - ...and wait.  :-/

7:30 am - After finally being allowed to use the restroom, Paula's taken back into the pre-op waiting area.  There are giant comfy chairs for the patients and tiny hard ones for the support staff (read: me).  It's rather amusing, actually.  Paula's feet don't reach the floor. Reminds me of Lilly Tomlin in "The Incredible Shrinking Woman."  Especially when she starts kicking her legs like a little girl.

8:10 am - After the 17th person asks her to spell her name and recite her birthdate and doctor's name, she gets to see the surgeon.  Paula says, "Tell me you brought your A-game today."  He responds, "Yup.  Always bring it on Tuesdays."  They're on the same page.  Good man.  Stronger woman!

8:45 am - Two nurses and an anesthesiologist later, we're ready to go to surgery.

8:55 am - Hurry-up...

9:05 am - ...and wait.  :-/

9:10 am - One bad joke later [don't ask, I've already begged for forgiveness (I think)], Paula's off to surgery.  Good luck!  I love you!

10:00 am - Hurry...

11:00 am - ...up...

12:00 pm - ...and...

1:00 pm - ...wait.  :-/

1:10 pm - Surgeon calls me and says surgery went well.  He explains all the gory details which, surprisingly, I didn't mind.  I'm so excited that it went well that I forgot to ask him some (what I think are) important questions.  Oh well, I'll see him again soon.  The really important part is that she's doing fine.  She'll be out of recovery by about 2:15.  I head back to the hospital.  (Don't worry, Paula told me to run errands, etc., since I was here by myself.  I used the time to buy her a gift.)

2:15 pm - I get to the hospital where I receive a pager similar to those you get while waiting for a table at a restaurant. Though she's scheduled to be out of recovery, they tell me she isn't.

2:45 pm - Hurry-up...

3:12 pm - ...and  OK, I'm tired of waiting.  I go back up to double-check to see if maybe my pager isn't working.  The lady tells me that she has been moved to a room after all. 30 minutes before.  Did they page me?  No.  Did they check?  No.  Am I frustrated?  

3:14 pm - Moving as fast as I can without getting yelled at by the hall monitors in scrubs, I make it to Paula's room in 2 min.  Elevator and all.

5:15 pm - Off to X-ray for a follow-up chest exam.  I start this blog entry.

5:45 pm - The secondary chest X-ray reveals air around the lung - a condition called pneumothorax.  Crazy name that means we'll be staying 2-3 days longer in this antiseptic hotel while they do another surgery to insert a chest tube and watch what happens.

6:30 pm -  Hurry-up and wait...

(o)X

We found out Friday that the genetic testing results came back negative.  Phew!  I've got my bag packed.  Check in time is 7:00 am.  Surgery is expected to start about 8:30.  I've got to stop eating, take a couple of showers with Hibacleanse, apply my anti-nausea patch, and that's about it.  Kevin suggested that I mark my right boob with "MY LEFT NOT YOURS".  One of my girlfriends said to me, "you sound like you are as prepared as you can be for this experience that you never expected.  You have a legion of care takers, doctors, and prayer warriors, and of course the Lord is with you and for you.  Picture him on his white steed, covered in armor, looking down on you saying... we are ready, I am here."  I hope this is a vision of the Lord taking me through the wilderness to a place of healing (as opposed to the more haunting alternative.)  Thanks to everyone for the love, encouraging words, positive thoughts, and prayers.  I expect I will be on narcotics the next time you hear from me.  Now get off the computer, and go tell someone you love them!

Scripts

Kevin got a call that the family photos are ready.  I intend to frame several of them for my bedside as an inspiration during my recovery.  We left work early today to go see the surgeon one last time before Tuesday.  He gave me a prescription for a scopolamine patch to put behind my ear the night before so I don't have nausea after the surgery.  That will be nice.  We met with a nurse to sign surgical consent forms, go over pre-op instructions, etc.  I got to see what the drain looks like.  It's the size and shape of a grenade, at least as far as I am familiar with grenades, which is not very.  She wrote me a prescription for a post mastectomy camisole.  We also stopped by the medical oncologist's office to pick up a prescription for a "cranial prosthesis".  This is insurance speak for wig.  

From the cancer joint, we went to the wig joint.  I felt kind of like Macaulay Culkin, "I see wig people".  There were rows on rows of ladies heads (sans body) displaying hundreds of wigs.  I settled on one creamy toffee "Erika", and one Pralines and Cream "Julia".  I was tempted by "Stevie" but the consensus seemed that she was too 80s.  

From the wig joint we went to Southcenter Nordstrom to find the camisole, and ended up at the Bellevue Nordstrom, because they have more sizes / selection.  A post surgery camisole has pockets for a lightweight form where your breast used to be as well as drain pockets at the waist.  

Kevin wanted to go happy hour and a movie, but instead he graciously drove me all over creation getting cancer stuff.  Thanks Kevin!  On the whole, the evening didn't turn out like either of us wanted.  If I had it to do again, I would choose the movie.  It was foolish of me to squander our last date night before surgery on cancer crap.  Sorry love :'(

At this point there's not much left to do.  At work tomorrow I have quarterly budget stuff and saying goodbye for six weeks.  It's similar to going on maternity leave in the same way that having a mastectomy is like going to the spa.  In other words, it's completely different.  I have a midday jaunt over to The Landing to have lunch with Kevin's mom.  I have to get the patch and some "Hibiclens" soap to shower with Monday night and Tuesday morning.  I have a PTO day Monday to clean the house (probably won't happen), buy a couple of tops that button or zip up the front, and center myself.  Then I should be good to go more or less.

In No Particular Order

A few of the things I like:
My blue Hello Kitty nail clippers (although they have been missing for months)
Briny olives
Sticky rice (don't care what the carb police say)
A very large handbag to carry everything
Trader Joe's
Boots
Soy lattes
Photos
Pedicures
Loralee's carrot cake
Reuniting with old friends
Singing
Feeling like I have the right thing to wear
Sincerity
When someone else puts gas in my car
Sunshine
Trina's potato salad
Hugs
The idea of the public library (though I rarely use it myself)
Seeing the world through Midori's eyes

Important decisions I've made:
I like the regular potato chips more than the kettle chips
You don't have to be related to be sisters
You don't have to be in the same time zone / be on the same continent / or keep in touch regularly to be close
If Midori wants to wear Sponge Bob pajamas to Christmas Eve service instead of the Christmas dress I bought her, that's fine with me
Some adventures are better than others, but even the bad ones can be good in some ways
It's good to live expectantly
It's good to practice gratitude
I don't plan to ever make a pie crust from scratch
You can accomplish a lot in fifteen minutes
I'm looking forward to the new Winnie the Pooh movie coming out in July
Chapstick is addictive
Being too careful can be just as bad as being too reckless
Rhinestone glasses make you look smart

Trials

We met with the oncologist Friday.  He is truly amazing in my estimation and something of a workaholic.  First of all, how many doctors do you know that take appointments at 5:00 on Friday and then make you feel as though they are in no hurry at all?  There is an oncologist on call 24/7, but he also invited me to call him at home if I need anything.  He takes two weeks each year for vacation and plans to be here for my entire treatment.  He seems to know everything there is to know about cancer and then some.  He has a lot of research interests, and seems quite interesting.  It's too bad we didn't meet him at a dinner party or in some other context, but since I need an oncologist, I'm grateful to have him.

We talked about the clinical trial.  He said investigational cancer drugs are generally reserved for terminally ill patients.  This is a trial for women with newly diagnosed locally advanced breast cancer to test whether adding investigational drugs to standard chemotherapy is better than standard chemotherapy alone before having surgery.  The treatment phase of this trial will be testing multiple investigational drugs that are thought to target the biology of each participant's tumor.  The trial will use the information from each participant who completes the study treatment to help decide treatment for future women who join the trial.  This will help researchers learn more quickly which investigational drugs will be most beneficial for women with certain tumor characteristics.  The trial will test the idea of tailoring treatment by using molecular tests to help identify which patients should be treated with investigational drugs.  Results of this trial may help make investigational drugs available to more women in the future. 


Sounds great except for a few things.  I would have to delay my treatment and submit to additional scans and core biopsies to determine the biology of my tumor and whether one of the investigational drugs is thought to target the characteristics of my tumor.  The answer may be no, and I'd be right back where I started.  I'd have to have additional blood work, MRIs, and core biopsies throughout the study.  And here's the deal breaker - they have just finished treating their third trial participant.  The oncologist would of course like me to participate if I'm eligible, and it would be altruistic, and it's possible it could benefit me.  However, I've decided to decline.  Based on where things are with me, they are already pulling out the biggest guns they have so I'm going to go with the standard chemotherapy and pray.

So now the train is gaining momentum down the track.  Or maybe it's more like an avalanche?  I have surgery on the 12th.  Two to four weeks later I will start chemo. For the first two months, I will have chemo every other week.  For the last three months, I will have a milder version each week.  Each treatment takes half a day.  I should be done with chemo near Midori's third birthday.

So what will I do before the surgery?  I'm not planning a boob voyage party though I think it could be a great theme.  We're going to a close family friend's birthday party Tuesday.  I'm seeing my mom and brother Wednesday.  Doctor appointment and wig shopping Thursday.  Gotta get a post surgery camisole. This is a non- irritating garment with pockets for my drainage receptacle.  Did I mention I'll be draining for three weeks?  I'll probably try to have lunch with my work friends next week.  Lunch with Kevin's mom Friday.  I'll probably go to church Sunday if I can find my bootstraps.  Everyone else, I'll see ya when I see ya.  

One thing I forgot to mention earlier is that the surgeon said more than half of patients that have their lymph nodes removed will have lymphodema.  I'll see the physical therapist at some point shortly to figure out how to try and head it off as much as possible.  Another thing I forgot to mention is that the MRI is suggesting a 4 centimeter tumor which is larger than we thought originally, but as long as it's under 5 it still doesn't impact the staging.  They'll know for certain when they get the thing out.  I think I just have one more doctor appointment before surgery unless the genetics testing comes back showing I a heritable mutation.

I feel inclined to say something funny, though I'm lacking inspiration.  So, I'm going to steal this funny story from an email I received.  (P - I hope you don't mind.)

As I read your blog, it reminded me of a friend whose situation was similar to yours.  She was 38 when she was diagnosed with Stage 3 breast cancer (which she beat), and her treatment was similar:  mastectomy, chemo, radiation, reconstruction.  One cancer story that she loves to tell occurred during the time between the mastectomy and the reconstructive surgery. The doctor had given her a prosthetic breast to help “even her out.”  One day, while pushing a shopping cart down the aisle at Walmart, she looked down in horror and shrieked to herself “OH MY GOD, I FORGOT MY BOOB!!” and put her arms up to cover he chest.  (She had forgotten her prosthetic breast at home.)  After a few seconds, she thought:  “Ahhh, what the heck – it’s only Walmart”, put her arms back down, and continued with her shopping.  Adversity has a way of making us reassess our priorities and focus on the things that are truly important in our lives.    

(o)(o)

Today feels like a bloggy day.  We had another appointment with the surgeon yesterday.  We talked more about the chemo before surgery approach.  There are several reasons to consider this approach.  I’ve already touched on this topic, but I feel I can describe it a bit more clearly at this point.

1.        If you can shrink the tumor you may be able to spare more of the breast.  In my situation, the area that is involved is too broad to be able to spare the breast.  At this point I have seen multiple doctors who all agree on this point.  In addition, I have two types of breast cancer.  One of them is DCIS (ductal carcinoma in situ).  The other is invasive.  In DCIS, the cancer cells are contained within the ducts of the breast, and the cancer cells have not invaded the surrounding fatty and connective.  DCIS seems to be easier to cure overall, but not as responsive to chemotherapy.  None of this is to say I couldn’t do chemo first, just that I wouldn’t get the gain of sparing the breast which seems to be one of the primary reasons for the chemo first approach.

2.        If you have chemo first, you will be able to see how the cancer is responding to the chemo.  (This would require additional imaging and biopsies.  I will have to review my earlier posts to remind myself how much I enjoyed these the first time.)  If you remove the cancer before chemo, you won’t be able to see whether the cancer is responding.  On the other hand, some of what is removed during the surgery and examined by the pathologist can be informative in determining the course of chemo.  This is information you would not have by doing chemo first.

3.        There is a clinical trial underway for neoadjuvant (chemo first) treatment.  If you are a good candidate for this trial it would give you access to newer medicine that is normally only given to people with advanced cancers or old people.  Is newer better?  Don’t know.  It’s kind of the point of the trial right?  Anyway, it could be better, and you’d be promoting science (which is not my highest priority at the given moment).

We are meeting with the medical oncologist today.  He will have more to say about items 1 – 3 above. 
So here is what is in my immediate future.  I will be having a surgery on 4/12. 

Most likely it will be to have a mastectomy of the left breast and to install a “portacath”.  The portacath is a medical appliance that is put, in my case, in the upper right portion of the chest.  They want it on the left to be out of the field of radiation later.  A catheter connects the portacath to a vein.  Under the skin, the portacath has a “septum” which is a self sealing deal that they stick the needle through.  This is what they will use to inject the chemo drugs and take blood samples.

If I decide to do chemo first, the 4/12 surgery will be just to install the portacath.  I have a meeting with the medical oncologist at 5 pm, and I should be able to decide tonight whether I’m doing chemo or surgery first.  Right now I’m leaning toward surgery.

The last piece of the puzzle is getting the results from the genetic testing.  I expect those to be back next week.  It’s unlikely, but if I do have a heritable mutation, then we will remove both breasts.  I pray this is not the case both for the impact to me and for the far reaching implications for those related to me.
Okay, so that’s the medical stuff.  Now for the other stuff.

Kevin is right beside me in this which I have to think makes all the difference in the world.  He has recently become so present for me.  He’s reading a book called “Breast Cancer Husband”.  I have to share a bit from the book, because I think it’s hysterical.  Did I mention I have a bit of a dark sense of humor lately?

Anger Management 

Which brings me to another point.  People will say – and ask – all sorts of things about your wife’s cancer.  No one would ask you how much money you earn or how often you have sex – but good friends, casual acquaintances, and coworkers might want to know which breast it is, and did they catch it early, and did her hair fall out, and all sorts of other intimate details. 

When one husband heard the “did they catch it early” question one time too many, he snapped back, “Nope, it’s too late.  Do you know anybody you can fix me up with?”

It’s a rainy day today.  I’m thinking about this old Eurythmics song.  (I think I’m going to make a Cancer Playlist.  Will let you know what it looks like when I’m finished.)

Here comes the rain again
Falling on my head like a memory
Falling on my head like a new emotion
I want to walk in the open wind
I want to talk like lovers do
I want to dive into your ocean
Is it raining with you

So baby talk to me
Like lovers do
Walk with me
Like lovers do
Talk to me
Like lovers do

Here comes the rain again
Raining in my head like a tragedy
Tearing me apart like a new emotion
I want to breathe in the open wind
I want to kiss like lovers do
I want to dive into your ocean
Is it raining with you

Thanks Kevin for walking and talking with me like lovers do.  I need you.  You’re my heart.

Here’s some stuff about some girlfriends.

I have a girlfriend who left for Korea 2 months ago to teach English.  Here’s a bit of our email exchange.  

LR: Miss you and worry about you.  It's very hard being so far away.

Me: I miss you and worry about you too...  Next time you see me I will be different in some ways.

LR: You will be the same in all the ways that matter.  Trust in yourself.  Trust in the part of you that will always stay the same through everything and invest in that.  Let the rest slip away.  It doesn't matter.

I know it doesn’t matter really that I will have one less breast and more scarring and no hair and a bunch of side effects, and I’ll probably age a decade in a year’s time.  I’m sure it will come as a bit of a shock for someone who hasn’t seen me in a year, but because my friend loves me and I love her, I know she won’t let her face betray a bit of shock.  She’ll tell me I’m more beautiful than ever or that I look like absolute hell. Either way, it doesn’t matter.  My real fear is that I’ll be a little less innocent, and a little more tough, and my heart will harden a little more.  So I guess if you know me, you know I’m not that innocent, and I’m pretty tough to begin with.  So that leaves my heart.  I will have to work and resist and pray to keep a soft heart.  It might mean all of it will hurt more, but it’s worth it mainly for my Midori.

I have another girl friend in Saudi Arabia.  I’ve known her since elementary school, but I hadn’t seen her in a lifetime.  We reconnected via Facebook, and she was in the states for her 40^th birthday.  It was such a joy to see her again.  She emailed to express her compassion for my situation, and I told her I would love to hear stories about her daily life as a distraction.  Since then she has been faithful in sending me stories about the life and times of her family.  I love to hear the everyday stories, especially about the children.  As a mom, they are so precious and familiar to me.  These are the messy moments that strung together are life.  It’s a breath of fresh air to have something to be engaged with that is not cancer.  It gives me hope.  I look forward to the stories, but more importantly, I look forward to getting back to the ordinary chaos of life that she describes.

One of my sisters in law lives in Germany and is trying to figure out how to be here during her spring break which should coincide with my surgery, assuming I go with surgery before chemo.  The plan is that we make a decision today, Kevin calls the Red Cross to find out if they will pay for the flight, and if so, she’ll be here the middle of April.  What a relief it would be to have her here.  I’m grateful for her willingness to come across the ocean to be with us. 

Then there’s my dear girlfriend that actually lives on this continent.  Okay so she actually lives closer to Cuba than Seattle, but still Florida is part of North America.  She told me she is coming to Seattle the first or second week of May (my choice).  She is coming with her son who is a week younger than Midori.  We can’t wait to see them.  She is leaving her younger son at home and traveling across the country with a 2 ½ year old just to be here and do whatever she can.  I am so grateful for her sacrifice.  Just knowing she will be here makes me feel supported, and the long overdue visit gives me something to look forward to.