A higher-functioning recovery point and Seattle

Oh my, it's been awhile!  So much to catch up on, but in summary I'm doing quite well.  I finally reached the higher-functioning recovery point that I was longing for.  About two weeks ago I started truly feeling on the good side of crummy instead of shades of less crummy.  I assure you that there's a difference.  "Shades of less crummy" is  perhaps, maybe, hopefully feeling a bit less crummy than yesterday, at least for the purposes of telling your mom that yep you're feeling better, but overall you're truly still feeling quite crummy. This was me for pretty much two months.  Then in early March, approximately coincident with decreasing my steroid dose down to 2 mgs per day (half a pill), I started to feel on the good side of crummy, with extended moments of feeling good between the crumminess.  And that goodness continues!  And the crumminess--well, it doesn't need to be discussed further, as we all know what it entails by this point.  But it's LESS. 

On Saturday I stepped down to 1 mg dexamethasone, so now I'm cutting my half-pills in half.  It's quite ridiculous, and the dose I'm getting is very imprecise because I lose a fair bit of the tiny little pill to dust when I try to cut it into quarters.  (The pill is smaller than a shelled sunflower seed before I attempt to cut it!)  As usual I had slightly worse head pain in the first few days immediately following the step-down, but now I'm fairly comfortable for most of the day.  I continue to have increased nausea as my steroid dose goes down, but I can eat through it.  It's just a nuisance.  I wonder if the nausea is just because of the steroid step-down, or does the neratinib make me nauseous and the steroid has just been masking it for me?  Who knows.  Also, my face is still puffy as can be.  I wonder how long it will take for that to go away? 

I have been working half days this week!  Huzzah!  This was my idea, because it doesn't feel right to feel moderately good and not devote some of that energy to my job, which is paying me.  Also, it would be brutal to have to work an 8 hour day straight out of the gate when I run out of time off, so I thought that starting off with half days would be nice.  Last night at dinner I told the family that I planned to actually GO to work today (yesterday I just worked on my laptop from home), and they all cheered for me!  E fist pumped the air.  It was precious.  Some treasured colleagues gave me rides to and from work, and I had a great morning with my co-workers; it was SO good to see and hug everyone.  Oh my, and I had 2000 unread emails when I started yesterday!  Goodness!  I got through 500 in 4 hours yesterday, so hopefully I can knock them out pretty readily in the next week or two.  Most of them are junk and don't need a response.  It's pretty boring to click through three months of emails, so fortunately I have some other more interesting tasks to do (at least two manuscripts to review for postdocs in the group, among other things). 

Last week my little family went to Seattle for spring break!  We had booked the trip in the fall, before the diagnosis, so I worked it out with my job to still go on the trip without abusing my medical leave.  We had a direct flight from Omaha to Seattle, so traveling wasn't too taxing for me, and we were hosted most of the time by my brother and his wife.  It was GLORIOUS.  We toured a chocolate factory, had the best weather of the year, spent three nights on the beach, went to the zoo in Ballard, visited the Ballard locks, and grilled out.  For my part, I did all of these things, but I also got lots of sleep in cosy beds, and only had one day on which I felt too crummy to participate in stuff (I mysteriously puked up my breakfast, thus freeing up the neratinib to cause diarrhea [bananas and yogurt seem to work for me to prevent this major side effect], and I was then a digestive mess for 24 hrs!).  That was one of our beach days, so the family just enjoyed the ocean without me, no big deal.  But it did mean that I didn't get to take them on a hike in the Olympic National Forest as planned, which greatly disappoints me.  We'll just have to go back!!   

Me on the beach at Moclips, Washington, with the wind conveniently causing my hair to hide my steroid moon face.

Us flying a kite on the beach at low tide.   

My heart in the Pacific.

My sis A gets the photo credit for this one.  The spouse and E jumping for joy at sunset.

We found DOZENS of sand dollars!  

My family, my bro, and his wife after we filled up on chocolate samples at Theo chocolate factory, the first organic and fair trade chocolate maker in the U.S. (as we learned on the tour).  The chocolate was DELICIOUS, and the samples generous.  

For some reason Google is failing to access photos from the latter days of our trip, so I can't post them right now, but I don't think I took very many anyway.  The ocean got most of my camera's attention.  

Oh, the final photo I have to share is of my brother's wedding blanket.  I finished it in time to deliver it in person!  Here it is folded up, but hopefully you can see the pattern in the stitches.  It turned out pretty cool, if I do say so myself.  Huzzah for no loss of small motor skills so that I could get this finished during my recovery.   Me and wedding blankets.  

R and A's wedding blanket.  Pattern and yarn from Knitpicks. I used the color Platinum.

     

The stockings were hung at last

After I was diagnosed with breast cancer and told that I had 18 weeks of chemotherapy before the mastectomy, it was clear that I was going to have a lot of time on my hands.  But not the kind of time that I can do whatever I want, like study microbes or bake cookies.  The kind of time in which I'm trying to take my mind off of the nausea or waiting to be called back into an exam room at any minute.  This kind of time begs for a craft project.  So I decided to start a Christmas stocking for my then 1-year-old daughter, Eleanor.  

I had started a needlepoint stocking for my first daughter when she was one, but I didn't finish it before Nori was born.  So like any self-respecting twenty-something, I passed it off to my mom to finish.  I found needlepoint to be tedious and slow, so for Eleanor's stocking I opted for a felt applique model, hoping it would be faster.  It may have been faster if I had bought a stocking of normal dimensions.  But oh no.  What I neglected to notice when I purchased Nori's felt stocking was that the finished dimensions were to be over two feet long by at least a foot wide.  

The gargantuan proportions and exquisite detail made for hours upon hours of cutting and stitching and sequin-ing.  I worked on this dang stocking during most visits to the Oncology office.  And it took me until Thanksgiving to finish it.  It really is a beautiful stocking.  I wonder if it will always make me nauseous, or if that's a temporary phenomenon.

The very day I finished Eleanor's stocking, I received a parcel in the mail from my mother, containing Azalea's unfinished stocking.  All of the needlepoint was done (huzzah!  Thanks, mom!), but the complicated assembly remained.  Initially I was disappointed to have so much work left to do on this stocking, but when I held up Azalea's meager stocking to Eleanor's behemoth I was grateful to have the chance to do some equilibrating.  

I returned to my friendly felt and used more needlepoint to attach the stocking face onto the felt.  I then sewed hundreds of white sequins (snow) around the needlepoint  before sewing on a felt back.  It's still not done, with some holly berries and a jingle bell waiting to adorn, but it was done enough for this year.  

And at last, at the ripe old ages of 2 and 4, my daughters had some stockings for Santa to fill with chocolates, pens, clementines, and socks.      

Eleanor's nauseating stocking is on the left, Azalea's needlepointed nightmare is on the right.

I hope that those of you who celebrate Christmas had a fantastic holiday!  For us, it was the best Christmas ever.  But last Christmas was not a hard act to follow.

Freedom

This is it.  I finally made it to the eve of the end of my cancer treatments.  Tomorrow is my last herceptin therapy.  I will get my energy back, I will get my third Wednesdays back, I will get my freedom back.  Despite the momentousness of the occasion, I am entirely underwhelmed by Tomorrow.  This surprises me because I thought I would be unable to contain my excitement.  On the contrary, my excitement is entirely contained.  Per usual, I think this deserves an analysis.

I have read that cancer patients sometimes have a hard time ceasing therapy because they have grown attached to their caregivers.  Also, patients wonder how they can possibly return to life without cancer.  These feelings can sometimes turn into depression.  I think it remains to be determined if I will be susceptible to this, but I don't expect depression to be a big factor.  I will still see Dr. Oncologist every three months for PET scans.  I will still see my favorite nurse around town with her son.  And I can't WAIT to return to life without cancer.  Cancer made me needy, and I don't like being needy.  Sign me up for self-sufficiency, please!  

Right now my lack of enthusiasm for tomorrow seems to be related to something I've posted about before, which is accomplishing a goal that I never should have had.  Also, I'm feeling a strong urge to get cancer treatment out of the way so that I can get back to Living.  I acknowledge that getting to this point was no small feat, it's just hard to embrace a celebratory mentality given the subject matter.  I guess I would say that I successfully toughed it out.  Yay?

But there is something that I was inspired to celebrate tomorrow:  my oncologist.  She is brilliant and caring and attentive and thoughtful.  Any guesses what I did to show her my appreciation?  That's right.  I made her a blanket.

    
It's my 12-hour afghan pattern and it makes the coziest blanket in the universe.  For Dr. O I chose three oceanic shades of blue because I envisioned the blanket providing a wave of calm and warmth after a long day of helping sick people.  THIS is where my excitement lies:  in giving her this blanket.

In related news, during the making of this blanket I acquired a protege.  It was only a matter of time, really.

Go, Azalea, go!

I'll end this post with a premature poke tally.  It includes both tomorrow's and the previous herceptin poke, plus the PET scan poke.  I suppose that this is where the poke tally ends?  I must say, I am grateful for that port, otherwise the poke tally would be much, much higher.  Possibly even doubled.  Port, I'm not going to make you a blanket, but I appreciate you.    

port  40

right arm 13

tummy  6

left arm  6

right breast 2++

left breast  1+

superior vena cava 1

T9 vertebral body  1

Family pile

Do you know what I just did?  I took a mid-afternoon bath.  I know that some of my readers, both male and female, are bath people.  Indeed, I could name a few who I'm certain have experienced the midday tubbie.  I myself, however, am not a bath person, let alone at a time other than night.  But armed with my newly cleaned tub, I took the plunge and it was glorious.  I am fighting a cold (please oh please don't turn in to a sinus infection, pretty pretty please) and I was dirty.  I find myself wanting for more excuses, but that's all I've got.  And that's okay.

I have discovered the best part of my family members attending college, pre-school, and daycare:  more and better family time.  When one parent's job was to stay home with the kids, the other parent was often rescuing the other parent from the job.  Now the only rescuing we do is of the kids from their respective daytime activities.  This leads to greater enjoyment of our time together.  It's wonderful. 

With this improved quality of family time we have had a most fabulous holiday weekend.  My only regret is that I have not taken enough pictures, although I am glad that I have experienced it with my own eyes rather than through a camera lens.  We grilled out with neighbors, we visited S. and her 4-week-old baby C., our dear friends Darci, Zach, & Sons came up for an overnight visit, and we went to the Gardens here in town.  So many great photo ops, most of which I missed!  But I did finish Eleanor's hat, and she modeled it for me.

We have a great abundance of tomatoes from our garden, and we are not (yet) canning people.  So we have been making all sorts of delicious tomato things to make sure we eat them before they spoil.  I have made vats of bruschetta topping and pico de gallo, and Ian has made four loaves of tomato bread (I can't link to a recipe because he just makes it up every time!).  While he was making the bread, the girls played with flour and made their own creations.  This is such a small fraction of the wonderful family time we had this weekend, but hopefully it conveys the message.

       

  

I won't belabor Ann Arbor

I had the most wonderful time on my trip to Ann Arbor.  I am so glad that I went.  It has been said by many that the lengthy drive would have deterred them, but not me.  I love a good road trip, especially with a friend.  My dear friend and former neighbor Darci accompanied me on the trip, to help with the drive and be my date to the wedding festivities.  (I totally mis-typed "date" as "data" several times before getting it right.  Nerd salute!)

I had checked out four books on tape from the local library and brought an entire case of CDs, but none of these were necessary on the way to Ann Arbor.  Darci and I talked the WHOLE nine hours.  I suppose it's a testament to our friendship, but I can't discount the fact that the conversation may have been a direct result of our mom freedom.  There were no kids to keep in line or take care of, and we could talk about whatever we wanted.  It took about three hours before we realized we could curse.  "Geez" be darned.

It was so great to see Maggie  (the bride).  She and I met in graduate school, and we became particularly close after I had Azalea.  I know, that's not the typical way it goes with friends and babies, but Maggie is special.  She would adjust her schedule to do various morning activities with Azalea and me, such as meeting at Lazy Jane's for the best scones in the universe.  It was the power of our bond that drew me on this road trip.

Upon arrival, I quickly learned that Maggie's hairdresser had canceled the wedding hair-do session, and no replacement could be found.  I am actually only semi-proficient at doing hair; I can twist and braid, but I'm lost with any electric hair tools.  However, I didn't want Maggie to be more nervous than she already was, so I confidently said that I could do her hair, no problem.  Fortunately she has a friend and a cousin who are excellent with hot hair tools, so they blow-dried and straightened out the business for me.  Then I set to work with the twisting and the pinning.  When it was all said and done, it looked pretty darn nice (but it's a good thing she wasn't sitting in front of a mirror throughout the process because there were some hairy [pun intended] intermediate stages).  As per her vision, it was twisted across the back, ending in a left-ear-proximal triple-twisted bun with some curls coming out of the middle.  It was finished with three modest white flowers at the bun-ear junction.  And the best part is that it didn't fall out while she danced!  Ultimately, stability was my top design concept.  

Before I did Maggie's hair, I offered a different service to Maggie's mom.  She was standing in the hallway looking like a ball of nerves.  I asked her how she was doing.  She shrugged.  I said, "Would you like me to rub your shoulders for a minute, to help you relax?"  She looked off into the distance and after a pause said, "Let me find a place to lie down."  Ha!  I followed her to the guest bedroom, where she laid down on the bed and pointed to her lower back, saying that it was quite sore.  I started to rub her lower back, but apparently not low enough.  She shoved my hands to her tailbone.  I rubbed and rubbed, and then she was ready for the shoulder rub.  I didn't mind at all, and indeed I had offered.  But it struck me as hilarious to be taken up to such an extent.

The best part of the wedding was the people.  There were 40 people at the rehearsal dinner, who were the same 40 people at the wedding, who were the same 40 people dancing at the reception.  I was so impressed by this, because often it seems you have to invite more than 100 people to get a full dance floor at the reception.  I thought this really spoke to how well Maggie and Sam knew their friends and family, and to the high quality of people in their lives.  There were many people whom I'd never met, but I felt like I'd known them forever.  Instant connections, instant fun.

I'll end with a photo of my road trip accomplishment.  You didn't think I just sat there whenever it was Darci's turn to drive, did you?  I started making the girls' winter hats for the season, and I finished Azalea's.  I've made an awful lot of hats in my day, but this one might be my finest achievement.  Fancy!

    

The blanket

I don't remember the first time I made a blanket, specifically an afghan, for someone's wedding.  The first one I remembered to photograph was for Amanda and Alex (2006), and it remains one of my favorites:

I know I made one for Mallary and Doc in 2004, but I don't think that that was my first wedding afghan, either.  My latest wedding blanket is for my sister Holly and hubbie Kyle, who got married in September (this is only my second knitted afghan):

Why do I make afghans for people's weddings?  It started out being something thoughtful and unique, but at Mallary and Doc's wedding I learned about a Native American tradition called the Blanket Ceremony.  After the spiritual leader blesses the couple, relatives drape a blanket around the couple to represent their new ways of "happiness, fulfillment, and peace".  My understanding is that this blanket is often white, but I have clearly chosen not to adopt that aspect of the ceremony.  Nor do I insist that relatives envelope the couple in my afghan.  I just create an afghan in the image of the couple and hope that it brings them happiness, fulfillment, and peace.  I'm additionally hoping that finishing Holly and Kyle's blanket on my last hard chemo day brings some extra pizazz to their marriage.

On a related note, I was recently the recipient of a most touching mini-quilt.  My friend Christine made it for me, and its pink carnation geometry seems to channel all of the positive thoughts that everyone is sending to my family and me.  I hope you don't mind that I am showcasing it here, C, but it is just so lovely.  I am going to hang it by my nightstand, possibly forever.    

Ten great things about today

In no particular order:

1.  I am done dripping taxotere and carboplatin into my bloodstream!!!!!!!!  No-mo-hard-chemo!!!
2.  I won the fight with benadryl and stayed awake the whole treatment.  This enabled numbers 3 and 4 below.
3.  I finished Holly's wedding blanket today.  I finished the knitting part over the weekend, but I still had to secure all loose threads, and that is the part that I finished today.  It's a pain-in-the-butt task, but overall it has been a fun project and the product is beautiful.  I will post a picture as soon as we install the software for our new camera.
4.  It was a lovely chemo date with Ian.  He drank a BIG cup of coffee from the hospital coffee shop and was downright bubbly and highly entertaining.  He walked home, midstream, and returned with hot homemade split pea soup for my lunch (thank you Lori or possibly Louise!!!  It was amazing.)  He rubbed my ankles.  Right now I can hear him serenading the girls with Golden Slumbers as they fall asleep.  He is amazing.
5.  We scheduled the PET and MRI scans for the end of next week.  I have my first surgery consult with a breast specialist in Iowa City on the 22nd.  These things make it onto my greatness list because it was such a relief to be healthy enough for the hard chemo today (but only barely...my platelets are 96 and she usually requires them to be 100.  A platelet transfusion is on the table when they hit 10), followed by relief to have the next steps in motion.  No plan for the second quarter yet, and no surgery date, but we're getting there.  Relief.
6.  The sun was out in spite of the ridiculous cold.
7.  I just read in Elisabeth's comment that the crocuses are emerging in NC.  I am so inspired by this news; crocuses are my favorite flower to have in the yard (lilacs are my favorite flower to smell, and carnations and daisies are my favorite cut flowers).  Dar Williams has this beautiful song called February, and although I've always appreciated it as a metaphor for a settled relationship, I just discovered that it works as a metaphor for what Ian and I have gone through this winter with my cancer.  I am thankful for the crocuses, and for Ian.  I'll let you know when the crocuses pop up in our yard.
8.  I am so distracted and moved by that song that I forgot what the other great things are.  Blasted hormones!  Oh yes, Brussels sprouts.  Ian peeled, halved, and washed some Brussels sprouts, then roasted them in the oven with olive oil, salt, and pepper.  Thankfully my appetite has not yet departed, leaving me free to discover the splendors of this much feared vegetable.  It was so delicious:  not at all bitter, mildly sweet, marvelous texture.  We have been roasting many vegetables lately, our favorites being broccoli and cauliflower.  I will never steam again.
9.  I took a bath and read more of my awesome book.  I rarely take baths (which is not to say that I rarely bathe) because I am so long that a seemingly insignificant portion of my body is actually IN the bath.  But today, it was a good choice.  So relaxing, and I am reading the best book I've read in at least a year:  "Cutting for Stone" by Abraham Verghese.  Frank, you especially would enjoy it, I think.  
10.  Ian and the girls went to the Co-op and brought me back some Newman O's with chocolate filling.  Got milk?  Yes I do.
        

Sick mom/healthy scientist

Let me apologize to any devoted followers who have been checking all week for new posts (Ami).  My hiatus was because I got it in my mind that I could finish my sister's wedding afghan before my next hard chemo (this coming Wednesday), and so I have been knitting away my precious blogging time.  I am awfully close to my goal, but I don't know if I'll make it.  Considering that I already missed the most important deadline of her wedding, which was in September, I guess there's no rush.  I'll post a picture of the afghan when I'm done because in my view it is one of my finest pieces and I would love to show it off.

Another thing that kept me away from blogging last week was work.  I worked full days on 4 of the 5 working days, which is rather exhausting (and exhilarating!) for me.  Don't get me wrong, I love going to work and feeling good enough to go to work.  The bummer is that the chemo fatigue lingers, especially in my brain.  Also, and this is something that I didn't realize at first, but I think that being at work forces me to spend energy on trying to be normal.  Normal is as simple as participating in conversations and heating up my own food, both of which are very good for me to do when I am on the upswing.  But this somehow feels like it takes more energy when I'm at work than when I'm at home.  It's nothing I can't or don't want to handle, and it gets easier every day.  By this coming Tuesday I'll feel 100%, and then the crumminess will start all over again on Wednesday.  There are so many things I want to do before then!

Going to work while undergoing chemotherapy has given me two lives:  one in which I am a sick mom and one in which I am a healthy scientist.  I know that being at work doesn't make me healthy, and I know that I'm not always sick when I'm home being a mom, but this bifurcation helps me function.  When I'm being a  scientist, I forget that I'm sick.  I get to feel smart and pretend that I feel fabulous.  And when I'm being a mom, claiming sickness helps me explain to my kids the otherwise puzzling hair loss, "port", and inability to carry them down the stairs.

I do get some time to feel like a healthy mom, and that is the best time.  Like today, when I made pancakes AND built a block tower AND went on a play date.  Click here to hear the anthem for my healthy mom energy.  It's an excellent song by Andrew Bird called Fitz and dizzyspells, and it's perfect because my energy does come in fits, I do suffer from dizzyspells, and I frequently tell myself to soldier on.  Oh, and did I mention the slightly whimsical beat and instrumentation?  With this song playing in my head, this sick mom rocked two little girls' Sunday.