Wednesday, February 23, 2011

The next phase of chemo

I thought that today was going to be the last day of the usual herceptin dose and the last day of the 18 weeks of hard chemo.  Instead, it was the first day of high-dose herceptin that I will get every three weeks through October.  It is quite exciting to be in this next phase of chemo and to think about no chemo next Wednesday.  The only side effect that I am suffering with this heavy dose of herceptin is heavy drowsiness.  I took a nap this afternoon, and I am still feeling sluggish in the brain.  But hey, I'll take this side effect any day over the multitude of bummers I dealt after the other chemotherapies.

Despite the absence of chemotherapy next Wednesday, I am not free from my oncologist that day.  My T9 vertebral body biopsy is scheduled for 9 am next Tuesday, and I will get the results from Dr. Oncologist the next day (Wednesday).  I also have to go in Monday for blood work, to be sure my platelets are at least 100 before the procedure.  Let's graph those platelets now (shown at right) so that you can see why we expect them to be 100 by next week.  Dates are along the x-axis, and I don't remember what the unit of measure for platelets is but that unit is the y-axis.  For the sake of clarity, I'm only graphing the last half of chemotherapy, which is the only time we've been in the platelet danger zone (gray area).  As always, the hard chemos are arbitrarily graphed at a value of 100, and the easy (herceptin only) chemos are graphed at zero.

I am awfully nervous about the results of this bone biopsy.  I'm going to try and stay distracted until then.  I plan to go to work tomorrow, Friday, and Monday (unless there are other federal holidays that I've forgotten about), and the girls and I are going to get out of town and do something special this weekend.  Maybe go to the state historical museum?  Who knows.  Anything to stay away from the precipice of tears that I teetered on last weekend. 

Poke tally:

"port"  20
right arm 7
tummy  6
left arm  5
left breast  1
superior vena cava 1

Tuesday, February 22, 2011

A plan for the second quarter

Today I had an appointment with a surgical oncologist in at the University of Iowa hospitals and clinics.  She specializes in breast surgery and is quite wonderful.  I brought files totaling the size of a dictionary, and she and her resident carefully went over everything.  Without hesitation the most aggressive surgery was decided:  left mastectomy with full lymph node resection.  I thought that the most aggressive surgery plan would include the right breast, or at least lymph node mapping on the right, but she disagreed.  There is no evidence from the PET or MRI scans that there is anything wrong with the right breast.  She said that she'd prefer to focus my healing energy on the diseased breast, or the region remaining after the removal of the diseased breast, and this seems like sound logic to me.  Since reconstruction of my left breast is not possible in conjunction with the mastectomy (because it's inflammatory cancer, because I might need a skin graft as it is [lots of affected skin has got to go], because I still need to do radiation), I can always opt for mastectomy + reconstruction of the right breast at the potential future date of reconstruction of the left breast.  This is fine with me.  Emotionally, I could have handled loosing both breasts at this time, but keeping the right one won't increase my nervousness about metastatic disease.  T9 has pushed that emotional limit already.  And what is "at this time?"  Monday, March 7th.  I will be in the hospital at least one night.  I will spare other gorey details at this time.  I'm sure they will all be revealed in due course, unless I am suddenly overcome with modesty.

So what of the T9 vertebral biopsy?  Still up in the air.  I received a call from the nurse at 3pm with yet another question from the radiologist.  We'll talk with Dr. Oncologist at chemotherapy tomorrow and come up with a new plan for that biopsy--before or after the mastectomy?  Here in town or in Iowa City?  I am happy to report that I am no longer loosing sleep over it.  What will be will be.  In the meantime, I have diverted some of my healing powers from the left breast to T9, and Uncle Rod's famous lentil soup will help strengthen those healing powers.  So delicious!!!

I probably haven't answered all of your questions, but I am SOOO done thinking about this crap for the day.  Just ask questions in the comments and I'll answer them in the next post.  Time to go jump on the bed, brush my teeth with princess toothpaste, and read Hand Hand Fingers Thumb before I fall asleep.  Now.  

Monday, February 21, 2011

Roller coaster

It has been quite an emotional weekend, and I'm sure you have been on the emotional roller coaster with me.  The good news is that today is good.  I'm finally listening to myself when I tell myself to chillax.  We don't have enough information to justify a freak-out, although the lack of information only fuels the freak-out for an active and creative mind such as my own.  Today is a government holiday, so although I had been looking forward to going to work I thought that being there alone would be toxic to my positive attitude.  Instead, it's project day:

-Ian and Azalea visited a pre-pre-school (aka daycare) and got both girls on the waiting list for this fall.
-Eleanor and I played with some favorite friends at our house, hosting a water tea party for distinguished guests (example at right)
-We started our garden, planting tomatoes, peppers, cucumbers, basil, and onions from seed.  We will nurture them indoors for several weeks before transplanting them to the real garden.
-We put away laundry
-I am cleaning the clutter from table tops, after I finish this post
-Ian is on a diaper errand
-Later we will go to the library to get some books on tape for our drive tomorrow.  The drive is only 2ish hours but we will likely secure 8+ hours of material because it is too hard to choose just one book.

See?  Plenty of delightful distractions.  Oh, and I have to walk over to the Dr.'s office to pick up my records.  

Just so you all know, tomorrow will likely be an information transfer day, and possibly a procedure scheduling day, but it is unlikely that I will have any procedures tomorrow.  My platelets are super low (56 on Friday), so it will probably be a few days (at least) before anyone wants to biopsy or otherwise cut me.  We just have to wait for my bone marrow to crank out some more platelets.  I'm hoping it doesn't take TOO long, because with this T9 back bone scare I am positively ITCHING to be rid of these breasts.  I feel like I am adhered to two death stars, two timebombs, two leaching toxic waste tanks.  I'm eager to be rid of them and to start radiating the premises.  Funny how a metastasis scare has wiped out any remaining sentimentality I felt towards my breasts.

Speaking of's a live performance of the song Timebomb (by the Old 97's).  It's not the greatest quality, but it was recorded at the Triple Door in Seattle and I have a soft spot for the Triple Door because my brother and I saw a show there in August.  This one's for you, Rose and Valentine, my fellow Rhett Miller and the Old 97's lovers.  I see they are playing in Omaha on March 31st...perhaps there is a road trip in my future.  

Friday, February 18, 2011

Asparagus smoothies, anyone?

My T9 vertebral body, which is a bone in my spine, is special.  It is glowing on the PET scan, it is darkened on the MRI scan.  The question seems to be not "if" it's metastatic cancer, but "what kind" of metastatic cancer is it, although Dr. O put it out there that an injury would visualize similarly (if only I were injured!!!!).  She wants to biopsy it to get more information about the receptors on the cells in that area.  She only trusts one person in town to do it, and they are unavailable until the end of the month, so I am to pursue this biopsy with the surgeon in Iowa City on Tuesday.  Apparently you can just jam a needle into the vertebrae and take a sample that way.  Fantastic.  

Some good news is that the breast cancer responded beautifully to the chemotherapy.  Everything that was big is now small.  With the distractions of T9, we didn't even discuss the fate of the healthy right breast, although I'm sure that the existence of T9 cements the fate of the right breast (bye bye, babe).  Additional good news is that metastatic disease had been my biggest fear, so now I'm free to proceed fearlessly.  The bad news is that my chemotherapy regime was designed to counter metastatic disease, so the question remains why it more or less failed.  The bright side of the bad news is that my brain, lungs, and liver are still clear, as cancer there would be the worst possible news.  There are still treatment options that come with today's bad news, although I don't yet know what they are and they will be dependent on the biopsy results.

It's high time I started to help out my oncologist.  She is working hard to make me better, but am I working hard enough?  I'm a vegetarian and I'm active, but I don't eat broccoli EVERY day and I don't exercise EVERY day.  Time to research and adopt an anti-cancer diet and lifestyle.  It's something I can do, and it's important not to feel helpless, although reality certainly seems to be moving in that direction.

Thursday, February 17, 2011

The 60th day

Business first by way of an updated poke tally.  I had a bonus port poke and right arm stick with the sinus infection a few weeks ago, and yesterday I had twin left-right arm sticks for the PET scan.  There will be another poke today for the MRI scans and another poke tomorrow to check my platelets (they were dangerously low as of yesterday, but still above the transfusion threshold), but where will the pokes be?  No one knows.

"port"  18
tummy  6
left arm  5
right arm 6
left breast  1
superior vena cava 1

I am slowly climbing out of the chemo fog.  The crumminess lurks, but I can participate in family life in moderation.  I unloaded the dishwasher this morning, and now I am recovering from that exertion.  After a grand sit I will start making lunch, followed by another grand sit.  I need to conserve some energy for my scans this afternoon.  

"Scans" is plural because what was supposed to be just a breast MRI scan is now also a chest scan.  This is because the PET scan did not sufficiently visualize my thoracic spine (fancy words for my back, I think) and so Dr. Oncologist wants more pictures.  I've been told there's nothing to worry about, she just wants a better view.  She is a thorough oncologist, and for that we are grateful.  So let's not worry.

Instead let's ruminate on the fact that today is approximately my 60th day of being sick <insert imaginary balloons and confetti here>.  This is worth celebrating because it means that the worst of the chemotherapy is behind me.  For the record, I can't believe that I have spent 60 days being sick.  It was fast, and also slow.  It was extremely hard, and also painfully simple.  It was a heck of a way to more or less skip winter.

You KNOW I have songs to express my feelings.  There are two.  Click here for the first song, by Norah Jones.  This is the song for the weary yet peaceful me, sitting in a deck chair on a Caribbean beach at dusk.  I close my eyes and breath deeply of the warm salty air.  I feel my children sleeping in a house behind me.  I feel the earth turning beneath me.  I am enveloped in this peace.  

Good try, Norah, but that doesn't quite capture everything I'm feeling right now.  Click here to listen to Carlos Santana's rendition of a different song, a song for the hbomb.  This is the song for the relieved and exuberant me, casting the fatigue and the deck chair into the sea.  The moon is high and I raise my face to it as I passionately dance in the sand.  My untethered hair flies about my face.  Skirt and sand cling to the sweat on my thighs.  I turn the earth with my being. 

That's better.  Thank you, Carlos.        

Saturday, February 12, 2011

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.    

Wednesday, February 9, 2011

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 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.

Monday, February 7, 2011

The grand finale

In keeping with our system of giving Ian a break on the weekend before hard chemotherapy, I took the girls to my dad's homestead for the weekend.  It also was a break for me:  dad watched the girls while I went to the Drake v. Northern Iowa basketball game with my fabulous new stepmom.  And what a game it was!  We were cheering for Drake, and they won by only 3 points; I daresay I witnessed a "money shot" with only 3 seconds remaining.  After the win, the team raced over to the students' section to celebrate.  I found this to be rather adorable because it's backwards from how I've seen it occur at big ten universities (don't the fans usually race out on the the court to celebrate with the players?).  I do love a good basketball game.  The fun continued when we got back to the house, for we bundled up the girls and took them outside to play in the snow.  It was a mild February day, and perfect for the girls to explore the three acres of woods, plains, and driveways.  A good time was had by all.

And now I am mentally preparing for the last hard chemo on Wednesday.  We've got this thing down:  groceries, check; vacuuming, check; bills paid, check; laundry, check; and on my personal list, Ian's bday (Feb. 12, the big 3-0) presents, check.  We even planned our meals so that tomorrow's supper is super yummy:  homemade pizza!    

Despite our preparedness, I am not as excited about the last hard chemo as I thought I'd be, or as I ought to be.  I am attributing this lack of relief to a couple of factors, the primary one being uncertainty about the subsequent treatment steps and the secondary one being the hurdle of experiencing the last hard chemo itself.  I am now a professional chemotherapy patient, with excellent support and excellent knowledge of what to expect.  Knowing what to expect is a comfortable feeling, even if what to expect is discomfort.  After this hard one I re-enter the terrifying realm of the unknown, which includes scans of uncertain outcomes, surgery of ill-defined proportions, radiation for who knows how long, and possibly reconstruction but maybe I don't want it.  Such a mountain of crud, with hard decisions on that mountain.  Not to mention the fact that this chemo is going to be a beast.  I cringe just thinking about it.

So let's not think about it!  Let's go to basketball games and play in the snow and make pizza!  Let's go to work and wrap presents and type a blog post!  And if I do think about all of those things mentioned above, redirect myself to the fact that it's the LAST ONE!  And after this one, my hair will start to grow back!!!  Huzzah to me!              

Thursday, February 3, 2011


I totally rocked it at work today, meaning that it was one of my most productive days since getting cancer.  Maybe I've finally figured out how to ignore the fact that I have cancer?  Or how to effectively distract myself with other things?  Regardless, I'm still feeling very science-y right now, and I feel inspired to bring the science to the cancer side of my life via the blog.  I haven't done that in awhile.

Today's lesson is on how herceptin works.  This is one of my chemo drugs that is specific for my type of cancer (HER2+), and I take it every week for the time being.  To understand how herceptin works, first we need to know that breast cells have a protein on their surface called HER2.  This protein sends a signal to the nucleus that tells the cell to divide.  So-called HER2+ breast cancer cells have too many HER2 proteins on their surface, resulting in too much cell division.  Too much cell division basically results in a tumor, although something must be slightly different in the case of inflammatory breast cancer because there's not exactly a tumor.  Anyway, here's a figure illustrating what I just said, taken from
 Now that we have cancer cells with too many HER2 proteins on their surface, we can see that one way to focus on these cells and not other cells in the body would be to target the HER2.  And that's what herceptin does.  It is an antibody that binds to the HER2 protein, blocking the signal to the nucleus.
Pretty amazing, huh?  I'm just glad that I'm finally to a point where I can research aspects of my own cancer.  It took a surprisingly long time to get to this place.