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.