Independence

I'm here to tell you that going from SOME steroids to NO steroids sucks.  It sucks a lot.  This has been the worst of the steroid step-down yet!  This week, I have had fevers (up to 101 F; oddly enough, they mostly start in the evening and are gone by morning; I'm probably the only one who has been sleeping under two blankets in this hot weather), fatigue, swollen joints (particularly knees, hands, and feet), and nausea.  Oh, and allergic reactions!  The steroids have been keeping all of my allergies at bay, including my normal allergies to pollen, but now that the steroids are gone my immune system is waking up to all sorts of insults.  In fact, my body has decided to be allergic to sunscreen, so I have itchy red bumps on my arms.  Needless to say I will soon be the proud owner of a long-sleeved swimsuit. 

Today I felt quite a bit better, finally (my last steroid was Monday morning; I felt mostly fine on Tuesday; the crummies started in earnest on Wednesday).  I even accompanied the kids to the pool today.  Nay, I DROVE them to the pool.  Because I can drive now!!  Although the process of getting off the steroids sucks, being off the steroids doesn't suck.  Huzzah for driving! 

When my youngest, E, found out that I was no longer taking steroids, she ran through the house shouting, "Mom can drive!  And eat pie!"  I presume the latter part of this is because when I first started taking the steroids, people were bringing us pies, but then Dr. Oncologist told me to eat less sugar because steroids interfere with the body's ability to process sugar.  So I quit eating pie.  And E thought that that was a big bummer for me.  She has a big heart. 

You might be thinking, was it weird to drive after 6 months of not driving?  Because I thought it was going to be weird.  But it wasn't at all!  I kinda spooked myself a bit--I checked the mirrors approximately a bazillion times before backing out of the driveway, I was super cautious at stop signs, etc.  I didn't want to screw up and lose driving privileges!  But beyond that, it didn't feel unnatural to be behind the wheel.  The weirdest part is going to be getting back into the habit of driving.  That is, we are all used to me not driving, so Ian continues to nominate himself for family errands.  But I could do that! 

It was at my appointment with Dr. Oncologist on Friday that she told me I could drive.  Also at that appointment I learned that I can quit taking the prophylactic antibiotic (it was preventing a particular lung infection--mission accomplished) and doing the 4-times daily anti-fungal mouthwash (this was preventing a thrush infection--mission accomplished).  HUZZAH for no more antibiotics and gross mouthwash!!!  I swear that when she prescribed the antibiotic, she told me I'd have to take it for 6 months.  Needless to say, I didn't argue with this turn of events!  She did say that I'm to keep taking the valacyclovir, which is to prevent shingles.  But there's really no side effects to taking that, so it's okay. 

Also at Friday's appointment, I got scheduled for a bone scan.  Bummer!  This is because I have a sore spot on my chest wall.  There's no bump or redness, just a bit of soreness.  It started about a week ago, and I figured it was related to coming off the steroids (its adjacent to an area of increased fat deposition).  This chest-wall pain has happened once before, and after doing the scans and seeing that there was nothing wrong with me, I was told that it was probably just my screwed up nerves (from the mastectomies and radiation) and I should rub the area to desensitize the nerves.  That worked.  The screwed up nerves aren't doing me any favors now, either, because I can't tell exactly from whence the pain is originating.  I think it's superficial, that is, originating in the skin and not the ribs, but I can't be sure.  Dr. O therefore ordered the bone scan to rule out an explanation for pain in the ribs.  This bone scan will be on Tuesday and will take 3 hours (inject me with some crud, then scan me 3 hours later).   I'll get the results at the end of the day on Friday. 

Happy Independence Day, everyone!  I will be celebrating my independence from steroids! 

Floating

I am digging this scheduled steroid step-down!  Takes the stress and worry right out of it for me.  Unlike February and March when I was previously stepping down my steroid dose, I don't analyze every little brain pain, wondering if I'm stepping down too quickly.  I'm just rolling with it.  Floating, in fact.  It's been incredibly liberating.

My massage therapist gave me the word "floating", as opposed to striving.  I had definitely been striving for lots of things this spring (striving to get stronger, striving to work, striving to participate in family life, striving to heal, etc.), and striving can lead to fatigue, stress, and frustration.  Floating, on the other hand, is so much more restful and stress-free.  So this next phase of my healing palace is focused on floating.  I suppose it's appropriate that it's summer and the awesome city pool is open, so that I can float literally in addition to figuratively.   

I typically feel moderately lousy for ~4 days after lowering my steroid dose, then I start to feel incrementally better again.  The lousiness comes in the form of fatigue and nausea, but it's not half as bad as it was in Feb./March when I was doing the step-down from the higher doses.  Currently, the side effects that are driving me crazy are the chubbiness and the water retention.  These are even worse than the facial hair that I've developed, lol (E said to me, "mom, when will your mustache go away?").  I'm sick of my gut being in my way when I bend over!  My shoulder/neck area is oddly chubby and uncomfortable.  My knees and feet are stiff, and my skin is taught.  In short, my body just doesn't feel right.  But I'm persevering!  I'm still exercising almost every day (probably 5/7 days each week...sometimes I'm sluggish but I get it done!), my diet is nearly normal (I still can't eat ice cream!  Messes up my guts!  Froyo for me!), I'm napping less, and my brain doesn't hurt very much or very often.  Huzzah!

MONDAY is scheduled to be my LAST steroid dose.  I'll take it with breakfast, then I'll be done!  I anticipate feeling a touch crummy next week, but I have no reason to expect that it'll be any worse than last week.  Then I'll float along until my own adrenal glands start up again, which Dr. Oncologist says could take up to 9 months.  Woa!  9 months!  That's a long time!  But that's okay.  I look forward to being alive in 9 months with some functioning adrenal glands.

Dr. O had previously said that I could drive again when I get off of the steroids.  I was thinking I could drive myself to work as soon as Tuesday?  But the spouse suggested that I wait until I see Dr. O next Friday just to make sure that I have her endorsement to get behind the wheel.  That's probably a good idea, but darn it's hard to keep waiting.  I feel perfectly capable of driving!  I've been biking around town, navigating traffic just fine. 

I'm going to invoke the Bliss List once again to share some exciting things  .I'm just going to restart at number 1, because I have no idea where I left off a few months ago.

1.  My friend R is coming to visit, from Boston, over the July 4th holiday!  Huzzah!!
2.  My friend D is taking me to see Hamilton in early July!  Huzzah!!
3.  My daughters have loved summer camp so far.  Huzzah!  They have attended three different day camps.  Tomorrow we'll attend the play that they've been working on for two weeks in one of the camps: a production of Hansel and Gretel.  In addition, A took a LEGO robotics class, and E took a ceramics class.  Next week they are going to a sleep-away girl scout camp called Sister and Me.  Isn't that adorable?  They are super pumped!
4.  Some folks in my lab have written some amazing scientific articles, and although they were all delayed by Lloyd, they all seem to be ready to submit for publication this summer.  By my tally, we'll be submitting 5 manuscripts this summer.  Huzzah!  I suppose that this item would be better presented on a Bliss List AFTER they are published, but that could be months from now.  I'm feeling pretty pumped up about it NOW because I did a lot of editing this week and saw how complete everything is. Thus, I'm going to float with the current bliss.
5.  My niece, baby A.  How can you not bliss out when you look at that face?  She and I have matching squishy cheeks right now--twins!  Thanks for bringing her up for a visit last weekend, H!  You guys are the best.

Baby A, in the arms of her mom and my sister.

Validation, and neither the Lion nor the Unicorn are the problem

The spouse and daughters are out having fun, so this is just a quick post to follow-up from yesterday's post and today's visit with Dr. Oncologist. 

"Overly poorly"--those are Dr. Oncologist's words to describe how people typically feel when they step down their dexamethasone steroid from a high-dose to a low (or ultimately zero) dose, which is what I'm doing.  Check that box.  I think that "overly poorly" is the honest way to describe how I feel.  I was overly generous with that Lion and the Unicorn crap.  ;)  SO:  my feeling exceedingly fatigued and crummy is the fault of the steroid dose-decrease process.

Things I learned today:

1)  Stepping down one's steroid dose actually increases fatigue.  Check that box.  She says it's in part because my adrenal glands have completely quit making my body's natural steroids, and it's taking my body a lot of energy to get my adrenal glands turned back on again.  This process takes a looooong time apparently.  I was relieved to hear that what I'm going through is normal and expected, in particular because MY expectation was to be feeling considerably less fatigue by now.  Instead, I'm feeling more fatigue each day!  It seems so backwards, doesn't it?  But it's all part of the healing process, and I'm doing it.   

2)  Stepping down one's steroid dose also causes nausea.  Check that box.  It's not nearly as bad as chemo-induced nausea, and I can eat through it, but yea it's crummy.  As if eating wasn't already a pain in the ass.  I am SO over protein powder.  I hereby declare that I'm taking a break from it. I deserve at least that much. 

3)  Stepping down one's steroid dose increases brain pressure.  We already knew this one, but I mention it because the time of day I chose to retain my steroid dose (evening) has set me up for extra discomfort.  I told her I was taking my one steroid pill in the evening.  She snapped her head away from the computer to look me in the eye and said that most people are more comfortable when they keep their dose to the morning, not evening, because then they have the benefit of feeling the steroid all day.  I'm pretty sure that I swore, and then said that I would have greatly loved that, but previously I thought I understood that she wanted me taking my steroid as far away from the neratanib as possible, and she had told me to take the neratanib in the mornings.  So when I did my steroid step-down, I presumed that she wanted me to keep my dose in the evening.  She said that I'm welcome to try and move my steroid to mornings, but I would have to do so by shifting my pill by a one-hour increment every day; I can't just skip my evening steroid and instead take it the next morning.  This incremental 'roid movement would shift my food intake (because I have to take the 'roid with food) and be a real pain in the butt.  SO, I told her I'm a tough cookie and I'll just keep my steroid in the evening.  But yea, the timing of my damn dose means that I feel steadily worse as the day progresses, then I have a few bites of dinner and wolf down my steroid before the meal is even over so that I can start feeling better.  I don't really feel it kick in like one does when one takes Nyquil or something.  But I trust that it's helping, and I do indeed feel oh so much better in the morning.  Mornings are my time to shine!   

4)  I told her that I wait until I have two days with no-ish brain pressure and that's how I decide to step down my steroid dose, and she said that that sounds good!  So I'm doing things correctly.  She asked about the brain pressure and I said that I have some, but it's not the worst that it's been and it's not zero.  She was fine with that.  So I think I've got a good, medically endorsed balance between brain pressure and steroid dose.  For the next 'roid step-down I'll have to start cutting my pills in half, then after that I'll take a half a pill every other day, then I'll be to zero.  No indication or inkling of how long that's going to take.  One day at a time, patience with my body, the present moment is mine. 

5)  Finally, steroids specifically deteriorate ones quadrecep femoris (thigh) muscles more than other muscles, so my current struggle with stairs and standing up is also completely normal.  I am doing a great job with my exercises, and I asked for other strength-building suggestions.  She suggested adding reps of simply standing up from sitting, maybe starting with a pile of big books on a chair or something a little higher than an actual chair (because it sounds ridiculous, guys, but I can't stand up from a chair without using my hands).  She directed me to hold my hands in namaste (aka prayer) or something like that for balance, and also to have something in front of the chair for support when I need it.  So, in addition to my walking workout, my leg lifts, and my yoga, tomorrow I will make/find time for doing standing exercises despite my increased fatigue.  This really is the healing Olympics! Holy cow!

This is hard, yo.  I've totally got this, but whew this is hard.  I feel like I'm my own puzzle, and every day I have to put it together under new conditions! 

Olympian in cancer-treatment recovery

I've turned into a recovery athlete--my hamstrings were tight and sore when I got out of bed this morning!  Ha!  That's a new development that both cracked me up and provided reassurance that I'm on the right track.  I mean, I know that between the exercises and the protein I'm getting stronger every day, it's just that I'm so eager to BE strong.  My legs are still so very heavy, and I still have bouts of whole-body fatigue.  That's when I sit in my chair with a hot cup of decaf black tea and close my eyes.  Or I lay down for my nap.  Don't worry, I've still got this.  I'm listening to my body. 

On Thursday I decided to skip my lunch steroid, meaning that I'm now only taking 2 steroid pills each day, huzzah!  This was a difficult decision because I had had pretty comfortable brain pressure for two days, and it's really really hard to chose discomfort over comfort. I was worried that cutting a steroid would increase the brain pressure.  It did, and I still have an increased level of brain pressure compared to Wednesday, but I can do this and it's not as bad as it was weeks ago.  I toyed with adding half of a steroid pill at lunch yesterday because the pressure was bothering me greatly, but I didn't and I've stayed disciplined and kept off the lunch steroid.  Each day the the brain pressure is less (better) immediately after my workout and after yoga, so my body just needs a chance to do what it does best:  heal.  And it's all about balance, because getting off of the steroids will help with the external pressure in my head (my face is so swollen from the steroids that sometimes its hard to discern between brain-swelling pressure and face-swelling pressure), and with the digestion, and with my stiff joints.  The other steroid thing that happens is that apparently when you're taking high doses of steroids like I was, your body's adrenal glands quit making natural steroids.  So my adrenal glands need to start back up again, and that will happen gradually as my oral steroid dose decreases.  I can do this.    

Digestion is still great, huzzah!  My new diet it not that hard now that I'm used to it (lots of yummy peeled root vegetables (I added beets, and eggplant, and radish to my vegetable list, huzzah for diversity!!), peeled fruits, canned fruits, avocado, banana, cooked spinach, nuts, eggs, peanut butter, some dairy, white starches).  I've been doing a lot with this and having fun trying new things.  I adapted this spinach soup recipe for my diet.  I roasted the garlic and I used ~5 cloves, I skipped all vegetables except spinach and potato, I added a dash of onion powder and turmeric, and I finished the soup with a splash of soy sauce, for Umami.  Pretty tasty!  Next week I'm going to try making eggplant bacon, lol.  Cooking the eggplant in a smoky sauce and having a sandwich sounds good.  I might not worry about getting it quite so thin and crisp--seems like the nutrition would be gone from it.   

Other achievement:  I finished a book!  My mom, B, loaned me The Paris Wife, by Paula McClain, and it was just the escapist fiction I needed to help me relax into my nap.  I'm a big fan of Ernest Hemingway and I've read many of the novels that he wrote while in Paris after WWI. This book is historical fiction about their life in Paris together as he wrote his novels and they built and destroyed their marriage.  It was a fun and easy read.  Now I've started Alias Grace by Margaret Atwood and it is awesome so far.  Huzzah for gently turning on my brain!! 

Oil for my family.4:  Monday is the spouse's birthday, so today the girls and I baked a chocolate cake from scratch.  He chose chocolate, and A said "not too rich, though!", so that ruled out my all-time favorite flourless chocolate cake recipe and my second favorite brownie chocolate cake recipe.  Many of the chocolate cake recipes I've tried turn out dry, so we tried a chocolate-mayonnaise cake recipe from a cookbook my grandma gave to me.  The girls were super skeptical about the mayonnaise, but I'm 90% sure that it will yield a moist, chocolate cake.  It seemed to be moist when I took it out of the round cake pans earlier.  We're using a chocolate frosting recipe from a different cookbook and will finish the cake tomorrow.  

Bliss list item 13:  I co-lead my youngest's Girl Scout Troop when I'm well, and my co-leader made me a poster (it's almost as tall as E!) and had all of the girls sign it.  It is so darn precious!  Thank you so much, ladies!  You're very thoughtful and kind, and I miss you, too!  I love you, friend A!       

Ru g_____/

I'd almost forgotten how this all works; the outpouring of love and support began days ago, and I just now remembered my mechanism of delivering thanks! Here, in italics before my posts, I will write brief notes of thanks to people who have shared their generosity and time with my family.  I don't use first names, just the first letter of your name (or other anonymous identifiers like "dad") and maybe a little indication of how I know you if I'm concerned about ambiguity.  If you sent something and never see a thank you here, do reach out to me because it's possible that we missed it and I don't want to miss a thing!  I acknowledge that this is not as good of etiquette as an actual thank-you note, but this is what I can manage in my life right now, and it seemed to work before.  <3

Dad and B:  Thank you so much for the delicious pies and for the nice visit, pops (you may have beat me in cribbage this time, but next time you're going down!!).  I love you so, so much.  BTW, Dr. O asked about you, dad.  She said she's looking forward to seeing you SOON (surely she has an agenda; I don't know what it is, but she specifically asked for YOU).  I'll see her next Friday at 4:30; would love to have you along if you have time.  

M:  Thank you so much for the key lime pie!  It's the best I've ever had, even better than the drunken ones my friends and I would bake in college at 1 am (yes, we did that.  Love you, college friends!).

A:  Thank you so much for the coloring book and Legos and beverages.  You are so thoughtful to think of my daughters.  I treasure my time with them, and with you, and it was even better that you stopped by to share the joy with us.  

N from college:  Thank you so much for the YOU GOT THIS socks!  And the box they came in has family photos printed in it!  Did you know that?  Both the socks and the box are so unbelievably awesome.  I am saving the socks to wear to my SRS treatment on Monday, because I need to be reminded that I've got this.  Thank you, friend!

N from work:  Thank you so much for the banana bread!  It was gone within 24 hrs.  It has been most enjoyable to watch your cooking and baking skills grow, and I am now grateful to reap the benefits! 

C from my work, and some of my spouse's co-workers:  It was so very thoughtful of you to send flowers!  They are all so beautiful.  The girls each asked to take a bouquet upstairs to their bedrooms, so our whole house is fragrant and vibrant, which is just what we need right now.  Thank you for your generosity! 

MIL:  Thank you for taking care of my girls when the spouse and I go to appointments.  And for feeding them, and us, with your nourishing food.  I love you when I'm not dealing with this shit, but when I am dealing with this shit the love transcends to such a depth of gratitude that I can't hardly handle it.  You are invaluable to the peaceful survival of my family, and knowing that they will survive is an essential element of my hope and recovery!!!!  I hate bringing this turmoil upon them!!!

Alright, guys.  Shit got real yesterday.  I met with Dr. Oncologist, my primary oncologist who has been with me since my original inflammatory breast cancer (IBC) diagnosis over 7 years ago. This was my first time seeing her since I received the results of my brain MRI because she was out of the office that day.  She answered all of my questions and gave me some additional answers, one of which I'd prefer if I still didn't know.

I don't think I'll be able to write anything else unless I dispense with the bad news, because it's just knawing on me.  Please note that my choice to blog about it is for me, not for you; I'd prefer not to share this with you, but it's gotta come out.  I hate knowing my official prognosis, because it's never been good (IBC only has a 50% 5-year survival rate--I've BEAT THAT!!  Huzzah huzzah huzzah!!!  This is so important to remember and celebrate!!!), so if I avoid the hard data it's easier for me to live without watching my clock of time tick away.  I have no intention of changing that attitude, but to do so the following information needs to be deleted from my brain:  Dr. O said that usually patients in "this situation" live another "12-24 months".  She did not elaborate on what precisely is meant by "this situation" (that is, is it the size or location of my particular tumor, or just the tumor itself?  Not that it matters), but clearly what is meant by "this situation" is some form of metastatic breast cancer in the brain.  I voiced my confusion, because Dr. Radiation Oncologist had played up the optimism of the efficacy of SRS treatment (90-95% effective).  She said yes but there will likely be other tumors and eventually many patients decide that they are tired of the treatments and then choose palliative care.  Okay, I'm reaaaaaalllllly far from that, guys, so hopefully my outward health will help me to live somewhat normally for quite some time.  Long story short, though, is that this is the beginning of a tumor-in-the-brain journey.  Hopefully it's nice and long!!!!

My spouse asked a question about why we're in this situation?  Why was Lloyd not on the PET scans, etc.?  She brushed it away with a disappointing but psychologically helpful answer: "This had to happen".  Apparently this is just what happens with people like me who had metastatic HER2 positive cancer and have been on anti-HER2 treatment.  The anti-HER2 treatments (the Herceptin and Perjeta that I've been taking every 3 weeks for 4 years) don't cross the blood-brain barrier, so the brain is the only unprotected place in the body.  So, tumors in the brain are precisely what happens.  Am I glad I didn't know that before?  AbsoF&*^inglutely, because I would have been fearing it, and fear is the greatest enemy to life.  (I have several musings about fear, and these are some potentially good ones here and here and here.)  But, the scientist in me wishes I had been aware, because I would have been paying far more attention to my brain function and possibly could have called for a brain MRI months ago, before Lloyd got so big and painful!  [The ignorance is my own fault, but I don't like to too deeply research my condition because the stats are so depressing.  I rely on others [my siblings, anyone else] to do the research and decide what needs to be disclosed to me.]  Doesn't matter.  Point is, this is exactly where I'm expected to be, given my medical history.  All there is to do is deal with it, and that's where I excel!  Give me a hoop, and I will jump through it!!  I'm a finisher, so I'm gonna finish Lloyd on Monday, and then the next cancer task, and the next one, for as long as I can.

Now that I've brought you down, please allow me to try and lift you up again. My HER2 cancer expert at the prestigious University hospital down the road told me that the key to surviving this crap is to survive long enough until the next drug is available.  There's still no cure, but new treatments are quickly becoming available.  Good news:  CARNATION NATION, we DID JUST THAT!!!  We survived until the next treatment is available!!  The new drug is called neratinib and it just completed clinical trials.  It has only been available for about 6 months!  It is approved for extended adjuvant therapy (that's me--"extended adjuvant therapy" means "years of anti-HER2 [or other specific cancer] treatment"), it targets HER2, and it CROSSES THE BLOOD BRAIN BARRIER.  Also--it is ORAL!  So, not only do I get to be one of the first patients using a new drug specifically designed to fight HER2 cancers in the brain, I get to take it by pill form instead of my tri-weekly chemo infusions!  How amazing is that?!?!

That's right, I get to stop using the Herceptin and Perjeta.  They have done a fantastic job of controlling the metastatic cancer in my lungs (it's completely gone!), and I remain infinitely grateful to their existence, my access to them, and my insurance coverage.  The reason I can stop taking them is because the neratinib will do the job that they aren't doing; the neratinib will actually do the WHOLE body, including my brain that has been elusive to the Herceptin and Perjeta.  So, if like me you are nervous about stopping the Herceptin and Perjeta that have worked so well, we must remind ourselves that the game has changed and our new perspective is that yes they worked well for the previous problem, but they do not work at ALL for the current problem.  We must focus on the current problem, for obvious reasons.

The two most important dots to connect in this post are "12-24 months" and "neratinib".  The existence of neratinib, and my access to it, will hopefully revise the "12-24 months" prognosis in ways that cannot be predicted.  Please join me on my crusade to delete "12-24 months" from my mind and remind me of the hope afforded by neratinib.  In addition, I was previously diagnosed with those dreaded lung metastases, which many of us feared would have killed me long ago, but I started the then-new Perjeta and look where it got me.  Hope and faith, people.  Hope and faith. 

I think my last piece of news is that I'm now playing side-effect roulette again.  This won't be as bad as chemo, but might prove to be interesting.  I told Dr. O that I still have a headache even after being on the dexamethasone steroid for a week, and my high-res MRI showed that I still have brain swelling, so Dr. O is upping my dose of the 'roids.  Instead of 8 mgs per day, I'm now to take 24 mgs per day.  Whelp.  Sleeping was nice, lol.  The 'roids are important because the brain swelling needs to go DOWN.  Brain swelling puts me at risk for seizures, and she said I probably shouldn't be driving (but I've been driving for weeks!  doh).  Also, the SRS treatment will injure my brain and cause more swelling, so it's important to get it under control before the treatment on Monday.  Okay, so more 'roids, which has caused an influx of prescription medicine into my house to counter the side-effects of the 'roids.  High-level roids such as these often cause fungal infections in the mouth and vagina, so I have an anti-fungal mouthwash to do 4 times per day to prevent an itchy mouth infection, and a pill to pop should a yeast infection arise.  High-level 'roids also tear up your guts, so I'm on some stomach acid-controlling pill.  Finally, 'roids reduce your immune response, so I'm on an antiviral to prevent cold sores that tend to flare up when one's immune system goes down.   (No visitors who are or could be sick, please.)  The side effects of most of these new drugs say, "headache and dizziness".  My poor brain!  What a hot mess it's gonna start to be.   But it's important to remember that I remain grateful for these medical resources to keep my body in action while it is dealing with the important job of eliminating a brain tumor. 

I almost forgot the most important thing I learned yesterday:  the SRS treatment will take place at 4pm on Monday, huzzah!  Thank you in advance for your powerful anti-Lloyd and brain-safety vibes that you might send my way at that time!!  I'll probably work in the morning, not because I'll feel like it but because I should save my paid time off.  I would work from home, but the new leadership in my job has put a cap on the number of hours that employees can work from home.  What new inane inconveniences will they think up next? 

I've been letting the kids play video games while I blog, but I probably should switch into dinner-making mode.  As always, thank you for your support!

Winning the war

Yesterday was my last dose of FEC, as long as there are no more surprise revisions in my treatment plan.  I will have a major huzzah after I get through the FEC aftermath.

I have been fighting many battles over the last 24 hours.  FEC sucks, man.  The first battle I fought was that mysterious allergic reaction to one of the components of FEC (no one knows which one).  Dr. Oncologist's strategy was to prevent an allergic reaction by increasing my dose of steroid (dexamethasone) from 12 mgs to 20 mgs, and my dose of benadryl from 25 mgs to 50 mgs.  I should also say that I did my part by taking the anti-allergy drug Zyrtec prior to the appointment.  Despite these preventative measures, the allergic reaction started up again after receiving the F, the E, and 15 minutes of the C.  It felt like I had snorted black pepper.  The nurse stopped the dose of C, and Dr. O gave me another round of benadryl and 'roids, for a grand total of 100 mgs of benadryl and 40 mgs of steroid.  I asked her, is this legal?  She just laughed at me and said she could give me more if it came to it.  The peppery feeling completely went away after this, so we resumed the C.  Soon after resuming the treatment, the peppery feeling came back and got worse; it was the burning feeling you get when you get water up your nose.  The nurse stopped the C again and waited with me for a bit.  The good news is that the allergic reaction never got worse.  My throat never got sore, my skin never flushed, and, most importantly, my lungs never tightened.  After a few minutes Dr. O came back into the room, assessed where I was, and asked me what I wanted to do.  I said I wanted to finish the C!  As long as my lungs remain clear, bring it on!  I therefore received the full, final dose of C, with little more than a peppery feeling in my nose.  Boom.  Huzzah!

I was more of an innocent bystander in the second battle of my day and night.  This battle was between benadryl and dexamethasone (the steroid), fighting for control of me, aka Side-Effect Hill.  Benadryl quickly gained control of my eyelids, but dexamethasone had a stronghold on my heart.  The dex hunkered down, commandeering my heart to pound out the drumbeats of war, all night long.  Benadryl made numerous offensive strikes, claiming an hour or two of sleep at a time, but overall the strikes were unsuccessful against the entrenched dex.  I finally dragged myself out of bed at 9:30 am, only to go downstairs and take another dose of each drug (as ordered by Dr. O).  I only have to take the benadryl while I feel the peppery nose (yep, still peppery) to prevent the reaction from worsening, and I only have to take dexamethasone one more time tomorrow.  The Battle of Side-Effect Hill will likely continue for at least another night or two.  Damn side effects.  Damn peppery nose.  Good thing I have a comfy couch for epic resting.      

The battles are tough, but I am winning the war.  The FEC has done it's job:  the breast cancer seems to be completely gone.  The tiny lump that Dr. O and I can feel could simply be scar tissue from the biopsy, that's how small it is.  My previous drugs (TCH+P) reduced the cancer substantially, but the FEC has obliterated it.  The most noteworthy fact, in my opinion, is that I had one lymph node adjacent to the cancer that felt swollen throughout all of TCH+P treatments.  In contrast, I can no longer feel this lymph node after three rounds of FEC.  In summary, let it be known that I am grateful for the FEC and remain humbled by its cancer-fighting powers.  But good lord am I glad that the havoc it wreaks is almost over.

Finally, I have an appointment for a PET scan on Tuesday, July 8th.  This is three days before resuming three more rounds of the TH+P-C treatment.  I normally hate PET scans because I frequently have false positives (I know they are false positives because I've had to go through the explorative procedures to prove it).  This one, however, excites me because we will see that nothing is glowing in my lungs.  I never felt like I had lung cancer, and I definitely don't feel like I have it now.  Dr. O did not say anything about the results of this scan changing the course of my treatment.  I am not even allowing myself a glimmer of hope about that.  But I agree that it's a good time to assess what's going on in those lungs.  I am quite curious.  Quite.  Again I say, bring it on!  Huzzah!

I'll end with a public service announcement.  I wrote this post while listening to Ray LaMontagne's new album ("Supernova") on Spotify.  Wow, it's excellent.    

Time out

The light is at the end of the tunnel for this round of chemotherapy.  That means it's basically over, so I'm going to count it as "done".  I've already done two of my six hard chemotherapies.  Can you believe it?  I can't.  It's not that it's gone quickly by any means.  It's more to do with the fact that I spent the first few weeks in such a state of disbelief that it's kinda like I'm only now in a state of acceptance, which allows me to feel like I've started chemotherapy rather than being dragged along by cancer.  

Started!  I've more than started!  One third of my hard chemos are behind me!  One third!  That's the ideal size for a slice of homemade fruit pie!  It's practically half!  I'll be done before I know it at this rate.  <imagine me doing a silly bopping song-and-dance here>

I'm sure that you're all dying to know how my gut control arsenal worked.  You'll be please to know that it worked quite well, most of the time.  On Tuesday the guts forced me to take things to the next level and implement a strict BRATY diet (bananas, rice, applesauce, toast, yogurt).  And I do mean strict.  Any deviation from this caused the guts to instantly lash out, from either direction at whim.  Apple juice, gatorade, and the BRATYs kept my body hydrated and in only moderate discomfort.

One consequence of this diet is that I woke up hungry in the middle of the night last night.  Let me rephrase that--my hunger woke me up last night.  Today, therefore, I am slowly trying to branch out from the BRATYs in the hope of giving my guts a bit more material with which to stay busy.  However, I feel like my nauseous, naughty stomach has been in "time-out", and it is only going to regain its privileges if it shows good behavior.  "You want some muffin?  Well, I'm only going to give you one bite of muffin, and if you act up again you will not receive any more muffin.  Is that clear?  (10 minutes later)  Good job!  You can have one more bite of muffin."  For the record, my stomach has earned not quite a whole muffin today.  It has been the most delicious muffin I've ever had.

Reading between the lines, you might have inferred that my nausea was not completely controlled, and you are correct.  I did a better job of taking my anti-nausea pill this time (ondansetron), but it gave me ugly headaches.  Turns out I prefer to be nauseous than to have a headache, and so I discontinued the pill.  (I have previously called these types of choices side-effect roulette.)  I discussed anti-nausea dissatisfaction with Dr. Oncologist today, making it clear that she knows I'm not throwing up but I'm also not quite able to eat.  Said another way, I'm not asking for a prescription and am happy to keep trying my non-medicinal approaches to nausea.  She does, however, have a different anti-nausea drug that she will prescribe for next time, and I am hopeful that that will help me turn an even sharper corner.        

One powerful anti-nausea that deserves more attention are my foot fairies.  I have at least three people who are quite skilled at foot rubs, and they employ knowledge of pressure points on the feet to relieve my discomfort.  A foot fairy has rubbed my feet every night this week as I am falling asleep.  One foot fairy pushes on a particular spot in the middle of my foot, causing my nausea to explode into tiny pink stars and float away from my belly.  I am very fortunate to have foot fairies.

My energy level is weak but strong, if you know what I mean.  I'm quite weak, but I'm also quite strong.  I need lots of naps but I have energy for laughing.  This might not make sense, but it's how things work right now.  Soon the need for napping will dissipate, freeing up more energy for laughing.

I also want to report that our first housecleaning is scheduled for next week!  We are so excited about this.  Our friends S&T signed us up for free housecleanings through Cleaning for a Reason, a service that provides four free housecleanings to cancer patients.  We are so grateful to have this service.  We plan to use the fundraising money to continue the service past the four free cleanings.  Because even after I've recovered, I might never again be well enough to vacuum.

Have a great weekend everyone!  

Get with the program, Toe

I met with Dr. Oncologist on Friday to discuss the results of the colonoscopy.  She too was delighted that there was nothing to biopsy.  My elation faded, however, when she answered my question, "what happens if my colon is still glowing on the next PET scan?"  She said that that is when things get more complicated.  Either we continue to watch it, or if the region has increased in metabolic activity there might be some exploratory gut surgery in order.  Ugh!  I don't actually believe that this will be the outcome, but one never knows, does she?  So we'll just hope that the glowing colon will go the way of the glowing spine, lungs, and chest wall and stop glowing in time for the next PET scan.

My next PET scan is at the end of May.

In the meantime, a body part from the peanut gallery has decided to participate in the post-cancer fun times. I have been having an issue with the big toe on my left foot.  I wasn't even going to mention it in the blog, because I thought it wasn't cancer related, but the podiatrist has mentioned certain possibilities that close the gap between my big toe and cancer.  Gulp.

One day before we left for Santa Fe, I noticed that my big toe was hurting around the nail bed.  I thought nothing, literally nothing, of it.  It's a toe.  Also, sometimes things hurt periodically and then they stop hurting.  Right?  Surely you all have experienced some random pain somewhere in your body, and you don't know what caused it, and when you wake up the next morning it is better if not resolved entirely.  This was me and my toe.

Well, in Santa Fe it got worse:  redder, angrier, more painful.  ("More painful" is not a comment on the pain level itself, just a comment on an increase in pain.  I was not limping or anything).  So I soaked it in epsom salts and smeared neosporin on it.  No resolution.  As a side note, it is not an ingrown toenail because 1) I have good toe hygiene! and 2) the reddness is around the nail plate at the base of the nail, not the sides of the nail.  Also, there was no injury or incident that I remember between me and my toe.

Darn it if the thing hasn't been getting worse.  The pain has stayed at the same low level, but it is now a little bit black-and-blue under the nail bed while being red and inflamed on the nearby skin.  I took my audience with Dr. Oncologist on Friday as an opportunity to get her medical opinion on this 2-week-long toe issue, and she in turn sent me to Dr. Podiatrist.

Dr. Podiatrist has an excellent bedside manner, a soft spot for microbiology, and a gift for explaining the possible causes of and outcomes for my problem.  In short, I am a fan.  (Why couldn't HE have gone into gastroenterology?)  Unfortunately, my toe doesn't fit any textbook phenotypes, so he couldn't make a conclusion without a biopsy.  We agreed that it is a bit too soon to rush into a biopsy.  So I am on a course of antibiotics in case it is an infection, and I am to watch it for changes.

And here's where the connection is made to cancer:  his concern is that it could be a melanoma (skin cancer) that just happened to develop under my nail bed.  It happens, albeit rarely.  So if it suddenly becomes irregularly shaped or continues to increase in size, a biopsy of my toe and toe nail is in order.  I forgot to ask if this would have showed up on my PET scan a month ago.  Are my feet even scanned?  I have no idea.  

Also, who on earth has to worry about melanomas under their big toe nail?  Apparently the girl who had inflammatory breast cancer.

My preferred hypothesis is that it is an infection.  Cancer is still to blame for this possibility, I think, due to a continued weakened immune system.  Please join me in cheering on the powerful antibiotic cephalexin (I used this antibiotic to make discoveries in graduate school!) and hoping is makes it all the way down to the toe peanut gallery.  

Phantom

This is a phantom post because I posted it in the past to appear in the future while I'm on vacation.  It is also a worthy title because I am going to talk about a phantom phenomenon related to some mastectomies.

I recently read the book No Less a Woman by Deborah Hobler Kahane.  She is a breast cancer survivor, and her book contains several essays by other survivors.  I read these essays with great interest, mostly with an eye to why (or why not) women choose to reconstruct after mastectomy.  I found numerous wonderful nuggets of information and perspective, including the discovery that some women regain feeling in and around their scar.  One woman cited discovering a phantom nipple.  She found a place on her skin that when touched just so, felt like her old nipple.

Can you believe it?  She must have found the severed nipple nerves. I did not know that this was possible.

I myself have not regained feeling in the left chest wall, armpit, or underarm.  In fact, if I apply body spray to the region, I cannot feel either the coolness or impact of the spray.  I can feel the pressure of a touch, and my bones still ache when pressed anything but gently, but the skin is not sensitive at all.    

Well, you can imagine that this woman's account got me thinking about my severed nipple nerves, where they might be, and how I might find them.  Considering my gross lack of feeling in a large area, it was not surprising that my initial attempts at nipple nerve discovery were unsuccessful.  Until I got the rash.

In January I had a mega rash in the shape of New Hampshire on my damaged chest wall.  It itched something fierce, which was entirely unfair for someone who thought she had no feeling in the area.  But one day, I swear the itch was on my phantom left nipple.  My brain thought that the left nipple was itching, but I don't have that nipple anymore.  The cruelty of cruelties was that I COULD NOT PHYSICALLY LOCATE the source of the itch, and therefore could not scratch it appropriately!  I halfway satiated the itch by rubbing somewhere near my 4th rib, but it wasn't as satisfying as itching the real thing would have been.  Regardless of this annoyance, I was excited (titillated?) to have discovered my long lost nipple nerves.    

Sadly, I lost my phantom nipple after the rash subsided.  I have not been able to find any place on my body that registers as "left nipple" in my brain.  Perhaps as the healing continues, my severed nipple nerves will re-awaken and find themselves near my clavicle, sternum, or armpit.  I will never give up the search.          

Sorry for a nipple post, dad.    

The power of suggestion, in three acts

This is not the post I sat down to write, but witnessing the events unfold might give us something interesting so I'm going to roll with it.

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ACT I

I am feeling extremely nauseous right now.  I'm not even kidding.  I might have to take a break and step outside for a moment.  Okay, I got a glass of cold water and threw the hat across the room.  That's a little bit better.  I wonder how long it will take to pass?

No, it is not something I ate.  No, I am not coming down with something.  All I did was put on a crocheted stocking hat, and within 30 seconds I needed to sit down or puke or both.

See, it's chilly in the house because the thermometer is on its way down to 36F tonight.  Although I have a fair bit of hair now, it is short, and as my neck got chillier and chillier I thought I'd put on one of my favorite crocheted hats from cancer treatment rather than turn on the furnace.  Mistake!  The nausea came rushing in.  I'm still having trouble shaking it.  I might have to eat a piece of chocolate zucchini cake just to show my body who's boss.

What a horribly powerful response from a seemingly innocuous accessory.

I think it's clear that my body is associating the crocheted hat, or perhaps the feeling of a head covering, with the side-effects of chemotherapy.  I wonder what I can do to get over this.  Is this yet another thing that I just have to power through, boldly wearing hats until my gut is desensitized?  Between the passage of time and the colder weather necessitating hat-wearing, I hope to overcome this nausea-induction soon.

*********************************************************

ACT II

The girls have been exceedingly tricky at bedtime lately.  Other words for tricky include naughty, argumentative, manipulative, crabby, over-tired, whiny, and pesky.

Eleanor's thing is to persistently get out of her bed.  She has always done this, but the problem has been exacerbated since starting daycare.  No, it has nothing to do with them, it's me.  I pick her up and cuddle her back to bed where I used to just lead her back to bed.  I used to just be able to steer her head back to bed, but with the advent of daycare I miss her and want to make sure she's getting enough love.  So when she wanders out of her room to find me, saying "Want to cuddle?  Want to cuddle?"  I melt.  I cave.  But this short on-the-walk-back-to-bed cuddle-tease just makes her more persistent.    

Azalea's thing is to never have anything quite right.  Mom, the water bottle isn't full.  Mom, my pillow's not good.  Mom, my sheet is neither covering my foot nor abutting my bed rail nor laying precisely parallel to the long edge of my mattress.  These things go on, and sometimes she works herself up into hysterics for no reason at all and is inconsolable.  This is all happening, mind you, while Eleanor is escaping and returning.

With Eleanor I had a good idea how to solve the problem (don't pick her up, idiot), but with Azalea I was a bit lost.  I consulted the best child-rearing book ever and learned that one strategy might be to make sure she feels safe in her room.  She might be stalling, and upset about failed stalls, because she is feeling insecure about some element of going to sleep.  Also, this book reminded me of something I know but didn't think to employ at bedtime (because they're just supposed to go to sleep, dang it!!!):  positive reinforcement.

Well, for three nights now I have upped the ante on my bedtime parenting, and already it is working.  Every time Eleanor got back into her bed, I showered her with accolades.  Whenever Azalea started to fuss, I assured her that her room was safe, that I would keep it safe, that I would be nearby, and that she could ask for me if she REALLY needed something.  I told them both that they were being good girls.

Success!  Tonight Eleanor only got out of her bed twice, and in the first three minutes after I left the room.  Azalea only had one small issue with the coordinates of the sheet and no tears at all.

Now who's manipulative and tricky, huh?  Thanks for your suggestions, Ms. Leach.

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ACT III

In my last post I had much to say about being comfortable with my new body.  It was as much to empower myself as to empower other women.  That's not to say I don't believe those things, but it helps to say it to believe it.

Yesterday I got two really great compliments on my glasses, of all things.  One day, two compliments from complete strangers.

It struck me as funny that I spend so much time thinking about how different I look, both from how I think of myself and from other women, but it turns out that other people don't even notice or care.  They just really like my glasses, and perhaps the way they compliment my face.

The compliments suggested to me that perhaps I'm looking good these days.  This was good to hear because I still see myself as looking better than that time I had cancer.  I stubbornly associate "looking good" with how I looked before cancer.  Perhaps it's time for me to adjust my self-image and take the suggestion.

I'm not crying

What is with me lately?  It might be my ovaries awakening from my 55-year-old chemo body into my renewed 30-year-old body, but I'm a tad bit sensitive.  However, my sensitivity doesn't feel hormonal, so I'm trying to pinpoint another cause.  The stress of a "normal" life while still having skin pain, arm pain, boyish short hair, etc. is certainly a culprit.  And I think it's highly likely that I have not yet processed this whole cancer thing yet.

For example, the other night I was writing some notes in my Wonder Woman notebook and I had to flip back to reference a previous page.  I was intrigued by what I found on that previous page, and I just kept flipping back and back and back until the beginning on the notebook, which started just after the cancer diagnosis.  The page that got me and jerked out some tears was dated Oct. 27, 2010.  It is almost entirely in my brother's handwriting--the cause of my undoing.  He detailed some of my goings-on:

10:30 pm  lethargic, nervous, drowsy.  Going to try to sleep.  Tummy hurts.
9:30 am 1 prochlor, 1 vitamin, 2 tylenol, 1 vitamin D
12:47 pm 1 ondansetron, 2 tylenol
6:30 pm  1 ondansetron, 2 tylenol
etc.

On the next page are some questions for Dr. Oncologist, in my own handwriting.  One question is, "On major fatigue days, I nap twice and can't do much of anything.  Is that okay?"  Doesn't that just make you want to reach into the past and give me a cuddle?  It kind of breaks my heart.  I had to stop reading.  I kind of can't believe I experienced that.  And the rest of it, too.  

The other example of my sensitivity-slash-need to process the whole cancer thing happened at work.  Before my diagnosis, my boss had planned to host a seminar series in June 2011.  So in January, between chemotherapies, I invited Heidi Goodrich-Blair.  She is an outstanding scientist in the field of microbial interactions and symbioses.  In June she visited, and I was her host.  I packed her schedule with all sorts of exciting meetings with excellent scientists, both at our center and at the university in town.  When the visit was over we embraced, said our thank yous and goodbyes, and I felt like crying.  It was supposed to be this professional, non-emotional work thing, and I felt like crying.  Why?  Because although I had gotten to visit with her, I didn't really get to sit down and talk with her about science?  Because I realized that she represented all of the wonderful people and things and places that were Grad School, and I missed all of them?  Because I realized that cancer had changed me, both professionally and personally, from the person she once knew, and that disappointed me?

The trick to these emotional things, I think, is that I am getting so deeply engaged with my normal life that I am not taking the time to Release these emotional things.  I eagerly bounce from work to kids to friends to family to chores with scarcely a moment for myself.  And I'm not mad at myself, because I think this is a natural response to not doing jack___ for 7-ish months.  The current lifestyle, however, urges me to deny the tears.

"For your information there's an inflammation in my tear gland."  (If this is your first introduction to the Flight of the Conchords I highly, highly recommend that you check 'em out.  Hilarious.)

But seriously, now I think it's time to work some Heather time into the schedule.  To just go sit and watch a sunset somewhere, savoring every dip of that orange globe towards the endless midwestern horizon.

Where should I go, now that my dad no longer lives in the best sunset-viewing house in the universe?  I'm taking suggestions.                    

Fluffy

Don't tell Dr. Oncologist, but this sinus infection is not going away.  I am halfway through a three-week course of a new antibiotic.  I have been diligent about washing my sinuses every night.  And on Friday, I resumed taking generic Claritin D, to dry things out.  But my sinuses are slowly building in pressure where they should be dissipating, and draining where they should be drying.  Drat.  Bilateral drat.  

Oooo I hate taking Claritin D, generic or not.  When combined with the antibiotic and antifungal drugs that I am also taking to combat said sinus infection, it makes my head fluffy.  This is probably the result of the drug cocktail created in my system, because each discrete pill claims that it could cause drowsiness.  Overall I wouldn't describe my primary side-effect as drowsy, but that is certainly playing a role.  I would define a new side-effect called fluffiness.  They should put that on the bottle:  "may cause fluffiness of the mind".   I can initiate thoughts, but I have trouble finishing them.  My attention span is a fraction of what it should be.  The worst part is that I'm sufficiently coherent to recognize this failure to close my own gaps in my own thoughts, and it is exceedingly frustrating.  I am channeling patience from elsewhere, as mine is wearing thin.  

After this is over I think I'll burn my pill box, with my bras.  Except for my nice bras.  Someone really should adopt them.   

Speaking of fluffy things and adopting things, our neighbor offered us a kitten.  A white kitten.  It is probably very cute and fluffy.  This is the closest we have come to getting a cat, but I think we're going to remain pet-free for awhile longer.  Cats are a practical pet in terms of their independence, but the whole pooping-in-the-house thing doesn't do much for Ian or me.  The plan is to hold out and get a dog in a few years.  We shall see.  I do enjoy a good cat cuddle once in awhile.  

You know what else is fluffy?  A certain pillow on a certain bed, just upstairs from where I am right now.  I think I should go check it out.  

I really ought to quit doing blog posts so late in my day.  I'm sure the multifaceted drowsiness is affecting the quality.                       

Many ups, just a few tiny downs

Guess what cancer patient got on her bike for the first time since October?  Oh yea, that would be me.  I have found it Hard to exercise during cancer treatment, but tonight I felt ready to get back on the exercise wagon.  This is in contrast to my cancer friend Emily, who is super hard-core and has been exercising throughout her breast cancer treatment.  I don't know how she does it, but I guess I wasn't a huge exerciser to begin with.  I just really love to go on bike rides and to bike to work.  The only discomfort on tonight's ride came from the pesky nerve damage in my left arm and its corresponding pit, but the pain was totally ignorable after the first mile.  Maybe I'll try biking to work tomorrow.  We shall see if I can get up in time.  That's the hardest part about resuming biking to work:  allowing extra time in the morning for the healthier commute.  Once it becomes habit again it's not so hard to wake up earlier.      

It has been an awesome weekend with the family.  We went camping with the ridiculously amazing Aunt Jacque and had a ball.  The girls in particular had a great time.  Nature is the best plaything.  And if nature is drizzling, cousins and aunts are the best playthings.  The grand finale for this holiday weekend was grilling out with our awesome neighbors on Ian's hand-made brick patio.  I know, I need to post a picture of.  Suffice to say that Ian has skillz.

Despite all of these fantastic escapades, I do have a tiny bit of possible cancer-related news that I haven't shared with you.  It should be nothing, so don't you fret, but it is weird.  Last Tuesday I noticed a rash.  Anywhere else and it wouldn't have been a problem, but as I'm sure you've guessed by now it is on my right breast.  (Why do I specify a side?  I only have one.)  I put hydro-cortisone on it for three days, but it didn't resolve.  Reluctantly, I called Dr. Oncologist on Friday.  She of course wanted to see me, wrecking my first potential 40-hour work-week since October.  She didn't know what it was and sent me to a dermatologist.  Dr. Dermatologist didn't know what it was and so he took a sample (aka biopsy).  This was all on Friday.  I should have results on Tuesday or Wednesday.  In the meantime I have discontinued the hydro-cortisone because if the rash is caused by yeast, the hydro-cortisone could aggravate it.  The reason we went so far as to take a biopsy before trying more preliminary treatments is because inflammatory breast cancer (my former cancer) can manifest itself awfully similarly to the current rash.  But I just had an enormous biopsy of the right breast in April that came back clean, so I'm not terribly concerned.  Just itchy and annoyed.

Why on earth would I have yeast suddenly growing in that particular location?  Who knows.  I don't ask these types of questions anymore, I just make the phone calls to get the issue taken care of.

Also, talk about delayed reaction to the radiation!  Oh my goodness I am so red and uncomfortable, and have been for at least a week now.  And the blisters!  I have had this patch of blisters about the size of a cell phone brewing near my armpit for at least 10 days.  They refuse to surface and just sting sting sting.  Also, a new thing that just started about three days ago is a trio of blistery lacerations on my side, just behind my arm.  I'm guessing they are from my skin spitting.  Bummer!  I'm doing the same twice-per-day regimen of ointments that I've been doing all along, so I suppose that that's what has saved me from more severe reactions.  And yes, there is room for increased severity.  I'm counting myself lucky that I only have these relatively few blisters considering the vast area that was radiated.  A large area around my incision, for example, is healing very well and is scarcely pink anymore.  And besides, it's not like these discomforts have prevented me from doing anything that I want to do.  Thank you, chemotherapy, for making me so (en)durable.

Updated poke tally:

port  31

right arm 12

tummy  6

left arm  6

right breast 2++

left breast  1+

superior vena cava 1

T9 vertebral body 1

Looking great in films

My problems are relatively unchanged from my last post:  I am still blowing massive snot wads, it is still cloudy, I still have cancer-itis.  It is strange to be in a static state for this long, but I suppose I shouldn't complain since nothing is that bad.  And things haven't been truly static.  The radiation is starting to give me esophageal burns, so that's a change.  It sort of feels like a perpetual lump in my throat, and it hurts to swallow hard or to swallow scratchy things, like toast.  Also, the skin that is being irradiated is quite pink, but that's all.  No blisters or anything yet.

Dr. Radiation Oncologist is quite pleased with the way my skin is holding up, and indeed with the way I am holding up.  He said that my "films [X-rays] have been incredible.  God, do I have to tell you that you're perfect?"  That was a lovely albeit unlikely compliment that day.  I never expected to be complimented on how I look in X-rays.  It's a handy thing to look good in, considering they see right through the sweatpants and baldness.

Today has been a medically busy day.  This morning I had my blood drawn, then radiation, then chemotherapy (triple-dose herceptin).  I reported to Dr. Oncologist about my epic and ongoing head cold, which resulted in a CT scan this afternoon to determine the magnitude to the probable sinus infection. In an hour I'll head back over for the second dose of radiation, and while I'm at the clinic I'll pop up to get the CT scan results from Dr. O.  I wonder if I look as fantastic in CT scans as I do in X-rays.  Maybe X-rays are more my "color".

It was a nice holiday weekend for me and the family.  The girls really enjoyed their Easter baskets and spending time with the extended family.  My dad rented a log splitter for the weekend, and so many of my relatives participated in seven hours of log splitting (aka earned their dinner).  It was certainly a new twist on the idea of "breaking bread together"--breaking logs together.  The amount of work accomplished was inspiring; maybe I'll host Easter next year and everyone can build me a garage.  Despite my teases, it was indeed a lovely day to be outside, and I'm sure we'll all contribute to the burning of the logs that were split.  Also, it was great to have the chance to "give back" to my dad, who has done so much, for so many, for so long.  Love you, dad.                        

Patience and patients

I am so tired of being treated for cancer.  I know I'm almost done with all of the hardest stuff, but I'm finding it hard to be patient with being a patient.  It's a lot like senior-itis.  You know, the condition of senior-level students near the end of the semester when they just stop caring because in they're head they're already graduated.  Yep, I'm fighting the cancer-itis.  I go to radiation with a weary yet impatient sort of attitude, I often forget to put soothing ointment on my skin, and I'm doing my physical therapy half as often as I should.  In my mind I've already crossed the cancer finish-line, when in actuality I still have at least 6 months to go (1.5 weeks of radiation, possible right mastectomy, herceptin through October).

What is UP with THAT?  I should be doing a better job of taking care of myself.

Part of the problem is that I have had a horrific cold this week.  The magnitude of the cold is certainly related to the cancer treatment.  I'm usually the person who neither misses work nor medicates for a cold.  This was soooo not true this time.  The cold knocked me down and stomped on my head.  I asked Dr. Radiation Oncologist if I was more susceptible to the cold because of the radiation, and he said yes, plus my white counts are still low from chemo, plus I have two little kids, plus I'm working.  I was sheepish then and promised to go get some rest.  Thank you, Ian, for enabling some epic sleeping for this mom-scientist this week.

Also, the sun has not made an appearance in...2 weeks?  I've lost track.  My mood is not usually affected by prolonged cloud-cover, but in light of my patient-related difficulties I think the lack of sunshine is contributing to my cancer-itis.  I've lost patience with the gloom.

But at last the tables have turned!  I am delighted to report that 1) I have the upper hand on the cold, 2) the sun is out today, and 3) the Easter bunny is ready to dazzle and delight some special ladies this weekend!  I think I'll pack up my impatience, slip it in the Easter bunny's basket, and watch it hop away.  I have no use for it.  

Last night I had a dream that Azalea was wearing a light blue dress as she left the house, headed to prom.  Eleanor and I were standing shoulder-to-shoulder in the doorway, beaming at the grown princess, our heads touching.  Both girls, incidentally, were taller than me, which is to say Quite tall.  Despite the obvious connection between this vision and the home movie in my previous post, I say huzzah for visions of myself living for another 15 years.  Hopefully this vision will help remind me of the importance of staying focused throughout the remainder of my treatment regardless of the cancer-itis.  

Yet another brand of fatigue

This was my schedule today:

wake up
walk to radiation
zap
walk home
drive to work
work
drive to physical therapy
exercise and ice
drive to work
work
drive home
walk to radiation
zap
walk home
nap
eat supper
play
read

And here we are.  In less than two days I have already had 4 doses of radiation, and although it's unclear if I am feeling direct side-effects (maybe some nausea already?) I am certainly feeling an indirect side-effect:  weariness.  The first cause of weariness is of course the multiple trips to the clinic, but the second cause is the speed-dial nature of the treatment as compared to chemotherapy.  Chemo was a lazy experience because Dr. Oncologist was often behind schedule, yielding much sitting around, and the treatments themselves were incredibly lazy with their drip drip dripping for hours.  Radiation is heavily caffeinated by comparison:  I arrive at the waiting room and barely open my book before I'm called back to change into a gown, and as soon as I'm changed I go get zapped, then I re-dress, and leave.  The whole thing takes less than 10 minutes.  It is leaving me breathless.  The side effects of chemo defined two types of fatigue, bone-crushing fatigue and lurking fatigue, and radiation is teaching me weary fatigue.

Right, I haven't yet told you about the radiation process.  I'll start with the dressing room.  It puts me at ease because the gowns smell clean like my mother-in-law's laundry instead of clean like the usual scratchy medical gowns.  I gown up and walk back to the radiation room.  It is a large room with a big radiation machine in the middle.  Curiously, along one wall are three display tables filled with snow globes, gifts from patients who wanted to add to the collection.  No one has yet been able to explain the foundation of the collection.  I get up onto the sheet-covered radiation table and lay down with my arms above my head in what I suppose are arm stirrups.  The technicians, who are all super fabulous, scoot the gown away from my left chest and tug the sheet and my body this way and that until my tattoos are perfectly aligned with the lasers.  It is difficult to lie still and let them tug the sheet; my instinct from a decade co-sleeping is to lift my tush and relinquish the sheet.   Once I'm lined up someone says "97", which I think means something regarding the position of the table or the radiation-emitting arm of the machine.  Also, someone places a warm washcloth on the left chest, its purpose to draw the radiation to the skin.  Then the techs leave.  The radiation-emitting arm moves to a position less than two feet from my view, at about "1 o'clock".  The part that faces me is a round flat disk the size of a tire.  In the hubcap position I can see lots of little metallic Kit-Kat-like bars that are always arranged to have some sort of opening in the center of them.  I have determined that these Kit-Kat bars re-arrange themselves to make a person's special radiation shape because they always move into the same shape for me, regardless of how they're arranged when I first look at them.  I've noticed that other people have some pretty complex shapes, but mine is simple:  a generous crescent moon, or a banana that a monkey sat on.  I think the radiation comes through this banana, and only for 20 seconds.  Then the radiation arm moves 180 degrees to somewhere past my left armpit and gives me another shorter dose of radiation, maybe lasting 10 seconds.  I don't know if it's still squashed banana radiation, but my guess is that the Kit Kats rearrange themselves for this new angle.  Anyway, that's it.  I wait for someone to tell me that I can move (just in case), then I hop down.  I get dressed and try to transition back into my day.  Fun times.

One of the technicians said that I'm welcome to have visitors come and check it out, so if anyone is interested just let me know.  I'd be happy to host you, any day, for the next 13 business days, at 8:15 or 3:15.              

A plan for the third quarter

Today I had my radiation oncology consult.  Dr. Radiologist is knowledgeable and comedic, rounding out my trifecta of amazing cancer-fighting doctors.  He volunteered praise for Dr. Oncologist, saying that he'd want her to be his doctor if he had cancer.  Additionally, he previously worked at a nearby cancer center in the state's captital and suggested that it's not as impressive as the one here.  He called the one here a diamond in the rough, not that America's heartland is rough.  Just thought I'd throw those details out there for any folks who still doubt the quality of care that I am receiving here in the pseudo-sticks.

State-of-the-art radiation equipment is indeed available here, which was an important detail for me to investigate according to my friend's dad/radiologist.  I will be doing twice-daily radiation, 6 hours apart, for 15 days (excluding weekends) using intensity modulated radiation therapy (IMRT).  The type and course of radiation is based on recent research from the MD Anderson Cancer Center in Houston, according to Dr. Rad.  IMRT is the type of radiation that is recommended for women with high-risk types of cancer and I am one of those women, despite my clear surgical margins, because my cancer was inflammatory breast cancer.  This radiation will have few side effects, and those will include certain redness and possible blistering of the skin towards the end of the treatment course.  Another tiny possibility is that damage to a smidgen of lung will affect my breathing; the radiation will miss my heart entirely.  The last side effect is fatigue, but Dr. Radiologist more or less said that compared to chemo fatigue I might laugh at radiation fatigue.  I'm thinking I'll be able to work half days at least in the beginning:  home, radiation, work, radiation, home.  We shall see.  My radiation appointments are not yet scheduled because I need the go-ahead from Dr. Surgeon in Iowa City and I need full range of motion in the shoulder.  I'm working on it.  First physical therapy appointment tomorrow.    

Notice how I used the word "was" in the above paragraph when talking about my cancer?  Pretty cool, huh?  Today is the first time I noticed my use of the past tense when referring to my cancer, and it made me giddy.  Chemo made my cancer a smaller "is", and surgery made it a "was".  Radiation's goal is to take away the "will be".  Hopefully the T9 spine thing was an absurd anomaly and this whole ordeal will have a tidy conclusion.  

I'll leave you with a funny anecdote.  Yesterday Ian and I were cleaning up dinner, but Azalea was ready for me to play with her in the living room.  Three-year-olds are not patient individuals, and although I appealed to her logic by saying I'd be there in a literal minute she kept up a slow chant of, "Mom-mmmmy.  Mom-mmmmy.  Mom-mmmmy."  Then she appealed to my logic and commanded me to lay down in my chair.  I have logged countless recovery hours in said chair this winter, and it has been my stage for countless hours of mommy-directed playtime:  books, puzzles, cuddles.  I'm guessing she figured it was nearly my chair time, which would speed her to play time with me.

Clearly I've spent too much time being sick; young minds do not remember me otherwise.

Eviction notice

Yes, this round of chemo has been harder on me than some of the others.  Yes, it could be because of the cumulative effects of multiple rounds of chemo (indicating that the next round will be the worst of all--yikes!).  Or it could be because my sinuses have taken on some unwelcome microbial tenants, and fighting them off takes more energy than I have available.

I have been toying with a cold for over a week now, but on Tuesday morning I woke up with green snot blooming and booming from my nose.  So I called it in to Dr. Oncologist's office, and they in turn called me in.  One blood draw, chest x-ray, and CT scan later, I was diagnosed with a sinus infection and told I was lucky.  It was of course not obvious to me how I was lucky, considering I felt like death two ways, so I asked for an explanation.  Apparently my white blood cell counts were good, but if they had been bad, I would have been admitted to the hospital.  I remind you that I'm supposed to have bad white counts 3-10 days after hard chemo (this is called nadir), and so I consider this stroke of white-cell luck to be further evidence that I have Wonder Woman-quality white blood cells.  (I really want to graph them for you, but the data from Tue. and Wed. are not available to me yet.)  My white cells and I, however, were ineffective at clearing the infection, and so Dr. O called in some troops:  cefipime (IV) and amoxicillin + clavulanic acid (pill for 21 days).  This is quite the eviction notice and then some; hopefully the pathogens get the message.  Being on antibiotics for 21 days will not be pleasant for the beneficial microbes that live in my gut, so I will try to pump them up with yogurt.  Sorry, guys, but that's the best I can do for you.

Today I am feeling markedly better.  Still some nasal discomfort, still feeling chemo-fatigued, still a bit dizzy, but the corner has been turned.  My friend Frank sent me a song to help me feel better, and I would be in trouble if this fantastic Stevie Wonder song DIDN't help me feel better.  I love music.

I am really starting to dread surgery (don't ask for details because I don't know yet and I don't like to talk about it).  To help me look past it, to see the end of all of this crud, my siblings and I are planning a Caribbean vacation for the end of cancer (and after I've accrued some vacation time at work, of course).  Well, "planning" is a bit of an overstatement, but we're going to do it and we're shopping for destinations.  I've never been to the Caribbean, but I think it will afford the perfect vacation for kids and adults alike.  Pictured above is a beach on the island of Culebra, which is momentarily at the top of our list.  Any suggestions from the audience?

Not gonna lie

This sucks.

Sharp as a post

I am known, at least to Ian, to be a mixer of idioms.  I think this is because I tend to learn by understanding rather than to learn my memorizing.  For example, vocabulary and trivia-type sections on standardized tests have always yielded my lowest scores, probably because they require gross memorization.  (I'd like to give a shout-out to my cousin Lauren who last week valiantly participated in a multi-school Geography Bee but was eliminated in the first round.  Don't worry, honey:  there are other ways to measure intelligence, and you are intelligent by all other measures!)  Idioms, I feel, must also be memorized, because to merely understand an idiom leads to idiom mixing.  For example, I have been known to answer, "Dead arrow!" when asked where to steer the canoe.  Clearly I was mixing the idioms "dead ahead" and "straight as an arrow".  There have also been situations in which I was ignorant of alternative meanings of idioms.  For example, when I emailed the final draft of my preliminary exam to my PhD thesis committee I claimed it was the "money shot".  I was excited at my achievement, and I knew "money shot" only in terms of basketball (a three-pointer at the buzzer, for example).  A bit later in life I must have used that idiom in front of Ian, and he burst out laughing and told me its adult context (I don't want to be responsible for linking to this definition, so you can google it yourself).  Only then did I realize that that email to my thesis committee contained my most embarrassing idiom blunder, to be sure.  Fortunately, they gave me a PhD anyway.  Whew.    

Today I am intentionally mixing two opposing idioms to describe my brain:  sharp as a tack + dumb as a post = sharp as a post.  Which is to say, not sharp at all.  I have settled on this as a fair description of my cognitive state because I don't think that chemotherapy has reduced me to being DUMB as a post, but I am certainly no longer sharp as a tack (if you accept that I ever was, of course).  I have moments of sharpness, and moments of postness, so...sharp as a post.  This usually clears when the dizziness clears, which should be next Friday or so.  This cognitive weakening is far more frustrating than any of the physical side effects.  I can live without hair and breasts, but please not my brain!!!!!!!!!!

The final proof that I'm temporarily reduced to being sharp as a post is that I did not trust myself to compose this blog entry at the time that I intend to use it, which is sometime this coming weekend.  I composed this entry on 1/19 at 9:00 pm, no doubt riding the steroid wave from hard chemo.  I like to call this 'roid wave the zone--the dexamethaZONE, that is (reminder:  dexamethasone is the name of the anti-nausea steroid.  For those of you devoted followers who have been curious, "In the dexamethaZONE" is the title I have been saving for a 'roid-induced 2:00 am blog post; fortunately, I'm never in the ZONE that long.)  Thank you, dexamethaZONE, for facilitating this post.  :)