Going going gone

I started packing tonight.  I am using the futon in the West Wing (that's what my brother calls my spare bedroom) as my staging area.  We might attempt to carry-on all of our belongings so that we don't have to give the airline another dime.  My husband and I are both light packers, and so by default the kids are as well (since we do their packing).  However, we are trying to jam the vehicle booster seats into the carry-ons as well.  This is to prevent the rental car company from receiving another dime.  The booster seats present a packing challenge, and we have accepted that challenge.  Tonight we borrowed a third, slightly larger suitcase from Ian's mom to see if that will fit both boosters.  In the end we might have to check this booster-seat bag, but at least it'll be only one piece and also contain up to 50 pounds of our crap.  Problem solved and money saved!

I can't even tell you how excited I am for this trip.  Those of you who have been here awhile might recall that my mind was on travel the last time I went through chemotherapy.  I was wanting a Caribbean vacation so that I could be warm and sit on a beach somewhere beyond cancer's reach (that particular vacation hasn't happened yet (so expensive!) but we have taken other vacations (to a Minnesota beach and to a Seattle beach)).  Now I find myself with my dreams coming true--I am in the middle of chemotherapy and I get to go somewhere warm and have ample cancer-free distractions.  Including the beach.  It has been such a welcome and uplifting distraction, for which I am deeply grateful.

If it's a distraction for me, can you imagine what it is for my children?  Instead of focusing on when I'm going to be sick again and for how long, every day is Disney Disney Disney.  They've practically forgotten that there's anything wrong with me.

I too have forgotten, because there's nothing wrong with me.  I am rocking this life like it's the only one I've got.  I'm laughing and hugging and working and playing and cooking and reading, just like always.  I get tired more easily than I feel that I should, but that's okay.  I just pause what I'm doing for a little horizontal time.  I can't emphasize enough how rejuvenating it is to lie down for a short while, even if I don't fall asleep.  I'm practically lying down even now.

Finally, do you know what else is going somewhere?  My cancer.  That's right, the firmness in my right breast is almost completely gone, and all of the lymph nodes feel to be reduced in size.  Hopefully the innumerable pulmonary nodules are responding similarly.  Buh bye, now, buh bye!  Bye bye!        

The vacation reveal

I have had a really good week this week.  The lack of carboplatin has not made a difference in my energy level or cognitive functioning (that is, I am still suffering bone-crushing fatigue and chemo brain), but it has made a difference on my nausea.  I am significantly less nauseous without having received carboplatin.  This has made a huge difference in my morale this week.  Recovering is so much more pleasant without nausea gnawing at your navel.

My reaction to carboplatin continued throughout the weekend, but not in an acute way.  Whenever I felt the reaction emerge, I popped another benadryl and conked out.  By Sunday I did not feel any further carboplatin reactions.  In related news, I recently complained to my dad that I wished there was a drug they would give you so that you could sleep through the whole chemotherapy ordeal.  They administer so many bonus drugs to relieve the side effects of the side effects; why not add a sleeping pill and just skip all of it?  He knowingly said that as nice as that would be, a person has to be awake to perform normal bodily functions.  This weekend taught me that benadryl provides the best of both worlds--a person is sufficiently awake between doses to manage the body, but when the benadryl works its magic the person can sail through several days of chemotherapy recovery.  I, for example, have no memory of Saturday, and Sunday is a blur.  Thanks, benadryl!

I spoke with Dr. Oncologist today, and she has not yet decided if we are going to replace the carboplatin or do without it.  After speaking with some of the nurses, I am starting to get my hopes up that we can fight this cancer without carboplatin or its supposed replacement.  Please please please.  We shall see.

On Wednesday we decided to tell the kids about our upcoming vacation.  Three amazing people are sending my family on a trip, and we leave next Friday.  I am getting so, so very excited, especially now that I am emerging from chemo round 3 (round 3?  Whaaaat?  Already?  I'm halfway done!!!!!!!!).  Here's the movie of us telling the kids about the trip.  (FYI the destination is revealed in the first 10 seconds, and the rest of the movie is our conversation about all of the amazing things we are going to see and do on our trip.)

This was my first time with iMovie, so please pardon the poor editing and sound quality.  Hopefully you can hear the important parts.

Have a beautiful weekend!

Double down

I will never have to take carboplatin again.  Carboplatin is the C in my THC+P cancer-fighting regime.  This is one of the two general mitotic inhibitors that I am taking to inhibit fast-growing cells in my body.  It's one of the two drugs that makes my hair fall out and kills my immune system.  But never again will it enter my body, because carboplatin raised the stakes yesterday.

Carboplatin, or carbo as I will henceforth call it, is known to cause immune reactions in people who experience multiple doses.  I had my first carbo reaction three weeks ago, which was my 8th lifetime dose of carbo.  This was a textbook case, as the literature says that the 8th dose is the most common time to see carbo reactions.

We then had some decisions to make.  What to do about carbo?  We doubled down on carbo.  Dr. Oncologist decided to premedicate with antihistamines and give carbo one more chance.  I started taking Zyrtec and Zantac (both antihistamines) three days prior to hard chemo day.  This was supposed to suppress my allergic response prior to exposure to carbo.  Then on hard chemo day, they gave me the same premedications as always, which are two anti-nausea drugs and the steroid dexamethasone.  According to the literature, dexamethasone plus antihistamines can reduce adverse reactions to numerous cancer-fighting drugs.

In addition to these premeds, when it was time to administer the carbo the nurse prepared for the worst.  She set up the nebulizer, put more benadryl in her pocket, and prepared a dose of epinephrine.  I put away my knitting so that I wouldn't cause any obstructions should things go south.  Double down.  

She hung the back of carbo and hooked me up.  It only took 5 minutes for things to go south.  I started to feel a scratchiness in my throat, near the top of my lungs.  I started to cough a little bit.  That was all that the nurse would allow.

She unhooked the bag of carbo and started a bag of normal saline, presumably to help dilute the carbo in my system.  She went to get Dr. Oncologist.

Before their very eyes my symptoms diversified.  I could feel the heat spreading from my lungs to my inner ears.  They could see my ears get red, as well as my nose, chin, and entire chest.  The nurse pushed 25 mg of benadryl, and it immediately caused a metallic taste in my mouth.  Then she had me suck on a nebulizer of albuterol to make sure my lungs stayed open.  She also pushed another dose of dexamethasone.  Something about this--the allergic reaction or the additional meds, who knows--started to make me feel seriously nauseous.  The nurse handed me the tiniest puke bucket that I've ever seen.  I sincerely hoped I wouldn't puke, because I had just eaten lunch and was sure that this 1/2 quart bowl would be grossly insufficient.  Then she pushed another 25 mg dose of benadryl.

Everyone watched my allergic symptoms recede as the side-effects of benadryl kicked in.  I remember the nurse hooking me up to another bag of saline, but at some point I fell into a deep sleep.

Dr. Oncologist had me stay until almost 5pm so that she could keep an eye on me.  She also asked us to keep another grown-up on call on Friday night, just in case I had a second, delayed reaction and needed to go to the ER.  Then we went home.

I have not had any further carbo reactions, but I have taken a few doses of benadryl just to be sure.

Dr. O said that I'm done with carbo.  The nurse said that she would never give it to me anyway.  So this begs the question, what happens to the C in my TCH+P therapy?  Do we replace it with something else, or do we skip the C?  Although I am delighted by the short-term benefits of a protocol that lacks C, I fear the long-term cost of a potentially less effective cancer-fighting protocol.  Dr. O said that there are studies in which people are administered just the TH+P, no C, but these folks don't have evidence of metastatic disease (I do--"innumerable pulmonary nodules").  She didn't comment about alternatives to C, which we know exist, but Ian and I worry that we can't just throw in a C replacement and still be qualified for the P (remember, we are getting the P for free from the drug company, and it's possible that we have to follow their protocol precisely in order to remain eligible).  So...we're consulting with Dr. Medical Oncologist at my other medical center to see if she has any suggestions. We have three weeks to figure out a new game plan.

In the meantime, I'm hopeful that the lack of C will help me feel less weak, or less nauseous, or something better.  So far I feel the same as always on the day after chemo--heavy bones, fatigued, not terribly nauseous yet.

I have probably forgotten something, but this is all I can think of for now.  I appreciate all of the well-wishes!  We're halfway to the finish line!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Chemo eve, round 3

What does one do on the eve of one's third round of chemotherapy?  When one knows precisely how crappy one is going to feel and for how long?  When you still have more rounds of chemotherapy ahead of you than behind you?

One eats.  And eats and eats and eats.  Thus far tonight I have had three falafels, some hummus, and cucumber slices while I cooked dinner.  For dinner I had bulgogi (seasoned chickpeas), roasted cauliflower, half of a grilled cheese sandwich, wilted kale, garlic bread, and strawberries.  Plus, I've eaten two homemade sugar cookies that my daughters decorated for Easter.  I've got my eye on some chocolate milk for a snack later.  

Hopefully these delights will carry me through my nauseous BRATY week.

I also have a long walk ahead of me.  I'm headed out in a few minutes to get some exercise while I can.  Hopefully it's not too windy out there.

In all seriousness, I'm actually a bit pensive about tomorrow.  Today a poem came to mind in thinking about chemotherapy round three tomorrow.  I hope you like it.

INTO MY OWN by Robert Frost

One of my wishes is that those dark trees,
So old and firm they scarely show the breeze,
Were no, as 'twere, the merest mask of gloom,
But stretched away unto the edge of doom.

I should not be withheld but that some day
Into their vastness I should steal away,
Fearless of ever finding open land,
Or highway where the slow wheel pours the sand.

I do not see why I should e'er turn back,
Or those should not set forth upon my track
To overtake me, who should miss me here
And long to know if still I held them dear.

They would not find me changed from him they knew -
Only more sure of all I thought was true.  

Balance

When you only have 10 good days before 10 more crummy days, it becomes challenging to decide how to spend the good days.  I haven't posted in awhile because I haven't felt like spending my free time on screen time.  Instead I've attended soccer games, sorted my kids' too-small clothes from the just-right clothes, baked and decorated Easter cookies with the girls, and spent time with friends.  Add rest time and work time on top of that, and that doesn't leave much other time.

This brings us to the issue of balance.  I'll put it out there, rather immodestly, that in normal times I am a rockstar of balance.  I have this rule about not taking work home, and rarely do I break the rule.  I keep the work at work so that I can be more fun and attentive at home.  It's not all that hard to do once you get the hang of it.  What is hard is to keep it that way; it only takes one night of working at home to start to slip back into the mode of, "oh, it's okay if I don't get this done today, because I can finish it tonight after the kids go to bed.  I did it last night and it wasn't so bad."  This might be true, but I find that in the long run it yields unpleasantness.

Instead I take the time that I could be working at home and use it for personal gains.  Usually I visit with the spouse and get caught up on important issues like who is going to do the Easter Bunny shopping.  We often watch a bit of a movie while I knit or crochet something.  Sometimes I exercise, either by myself or by going on a walk with neighborhood friends.  Still other times I get caught up on correspondences (I'm forever behind on correspondences).  And I always aim to have the house more picked up than it is.  If I worked at home, when would I have time to do these other important things?

Cancer treatment always threatens to tip me off-balance.  This is because of the long stretches in which I can't do anything, so when I emerge from the chemo fog I feel behind on life.  How is a girl to prioritize her laundry pile vs. manuscript revisions vs. the grocery store vs. a walk vs. friend time vs. time to just be?  Particularly in a background of scheduling and managing oncology appointments?  It's madness, I tell you.  Sheer madness.

And yet, it's fulfilling madness.  Take today, for example.  I gave a lecture at the University, stopped at the clinic for an appointment on my way back to my office, checked out some new data, wrote some official letters, then took the kids to an Easter egg hunt.  It was an excellent day in which I achieved diverse tasks.  I hope that I can make tomorrow every bit as excellent before I get knocked down on Friday.

I have a secret that adds to the fulfilling madness.  In two weeks we are going on a trip (!), so I have spent several evenings planning the trip.  Three generous and loving folks (who wish to remain anonymous) are sending my family SOMEWHERE, to give us a mid-chemo break from the madness.  The reason I can't tell you where is because we're not yet telling my kids, and it just seems unfair to tell you before we tell the kids.  We're going to tell them the weekend before our departure, so you only have to wait 10 days to find out.  It's somewhere I've never been.  Oh my goodness, I'm terribly excited!!!!!      

Speaking of having something to look forward to, SAVE THE DATE!  My childhood other-mother, dad, stepmom, and aunt are throwing us a huge party!!  It'll be in our town on June 14, 2014, from 4-10pm.  They are planning a benefit dinner, DJ & dancing, raffles, kids' carnival games, silent auction, and 50/50 raffle (I don't even know what that is!).  I'm not going to put the location on this public blog, but you can email me at 30carnations(at)gmail(dot)com (or my personal email if you know that) and I can give you the final details.  It's going to be an absolute blast!

I also added a few more recipes to the Recipe page.  I know some incredible cooks, apparently!  The food that people have been bringing is incredible.  If you've brought food and have the time to send me the recipe, I'd love to post it on this page.  Everything is delicious.

Time to step away from the computer.  Time to cultivate some balance.  Time to just be.  

Energy

Maintaining some semblance of mental health can be difficult when you have cancer.  Even when you think that you are on top of your game, something will remind you about death and cancer and throw you off.  You can't take for granted that this day will be a good mental health day.  Every day is a new iteration that takes renewed attention. 

Things I do to stay in good mental health are maintaining a good work-life balance, eating healthy foods, exercising, meditating, spending time with friends and family, listening to music, crocheting, and knitting.  Usually there is something in this repertoire that can help me out when I need it.  

Today I tried something new for my mental health.  I had a restorative energy session with my yoga instructor.  I've never done "energy work" before (as people who are in the know seem to call it) and I didn't know what to expect.  I wore clothes suitable for exercise and brought my yoga mat.

It started with a long conversation with my yoga instructor.  Among other things, she asked about my medical treatment, old injuries (physical and mental), and fears.  During this interview I realized that for a long time my biggest fear was that my cancer would come back.  Now that this fear has become my reality, I don't harbor very much fear anymore.  Only two fears, really:  1) mild fear of the bodily pain and discomfort that comes every third Friday, and 2) strong fear that I will not be around for my daughters when they are older.  I am not afraid of cancer, or surgery, or death.  It was comforting to annunciate this and to be in the room with the fear.

Then I laid down on a rolled-up blanket on the yoga mat with my arms at my sides.  This is a nice pose to open the heart and relieve tension in the body.  She placed a light bean bag over my eyes and a cool stone in each hand.  The stones were because my yoga instructor said that the chemo treatments are causing a lot of heat in my body.  This is quite true:  heartburn and rosey cheeks from the steroids, preliminary hot flashes from my chemo-killed ovaries, and boiling guts from the taxotere.  The stones served to draw out some of this heat.

Once I was all set, we did the energy work.  My body relaxed into the floor and my spirit grew into the space around me.  My breath deepened into my belly, releasing the stagnated air from the depths of my lungs.  I hummed to encourage any fear around my heart to exit with my breath.  I hummed louder and louder until I didn't need to hum anymore.  Then, I sighed.  Deep, satisfying sighs.  I am perfect.

Afterwards I felt open and relaxed.  I didn't want to spoil the feeling, so I went to a nearby nature area and sat.  Today was warm, overcast, and breezy.  I watched a hundred geese playfully soar, forming and reforming their V's without travelling anywhere.

I am forming and reforming.

The wind in the grasses near where I sat today.  I loved the sound and wanted to share it with you.

 

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!