Continued non-linearity, in two parts

Part I

Hi everyone!  I deeply apologize for the delay.  I have been exhausted for pretty much the entire month of July, ever since getting off the steroids.  In fact, where I was expecting to feel better daily, I seemed to feel worse daily.  I had fevers and headaches daily, and they were increasing in intensity.  Well, this past Monday, we found out why:  I had an MRI on Monday, and it revealed some super awesome very good news for the long term, and some bummery news for the short term.  Long-term super awesome news:  Lloyd is dead!  There is no blood flow to my former brain tumor, Lloyd, and it has changed in appearance in ways that are consistent with necrosis (death).  Additional awesome long-term news:  no new tumors in there!!!  Huzzah huzzah huzzah!! 

Short-term bummery news:  brain swelling has resumed in a major way!  This news was actually rather pleasant because it explained everything that I've been feeling:  headaches, fevers, exhaustion/fatigue, and even nausea to the point of puking (and I'm not a puker)!  It's also pleasant because it's solvable:  back on the steroids.  Boo!  But, I welcome them at this point, that's how awful I've been feeling.  I'm back up to 12 mgs per day for one week, with a prescribed step-down for a month, and another MRI in a month whilst still being on a few mgs of steroids.  Should be informative!

Apparently it continues to be miraculous that I'm not having seizures.  After the doc asked if I've been having seizures and I said no, he asked if I'm on an antiseizure medication.  I said no, not to my knowledge.  Cool.  I'll go with this no-seizure thing.  Maybe it's because of the mad napping/brain resting skillz that I've developed.  Lots of floating, less striving! 

I puked up my first steroid dose, but now I've had two days of roids.  And today I had only a mild headache and no fever!  Talk about fast-acting!  Thanks, dexamethasone! 

Part II

Now I probably should rewind a bit and explain the previous post about my port removal.  At the time I was in the hospital with no laptop, and it's too hard to blog on a little tiny phone.  So, you got a short poem instead of a long post.  Here is the epic tale of the loss of my beloved port:

At the end of June, when my fevers began, Dr. Oncologist first wanted to rule out an infectious source of the fevers.  I had a chest x-ray (negative), urine test (negative), and two blood draws for culturing bacteria (negative from my arm, POSITIVE from my port after 5 days of growth).  So, because the port culture took sooooo long to grow, Dr. O thought it might be a contaminant of the process rather than a real port contaminant.  But, we repeated the test to confirm.  The office called me after three days of growth to say that the cultures were negative, and we proceeded to head to vacation in northern Minnesota the following day.  HOWEVER, after 4 hours on the road, the office called to tell me that in fact my port culture had grown the same bacterium again overnight!  Noooo!  They wanted me to turn around, go home, wait for my fever to get above 100.5, then go to the emergency room.  But I had already been having fevers above that, so we decided to proceed on vacation.  Then Oncology called back and had changed their minds--they wanted me to come home and go directly to the ER for IV antibiotics.  This made much more sense to me, but I still didn't see the point in returning home.  We were 6 hours away at this point!  SO, I dropped the family off at our amazing vacation spot on Cass Lake, then I drove to Bemidji and checked myself into the ER there.  I told them what was up and asked for IV vancomycin.  They tried to repeat the blood cultures, but my port wouldn't work.  I took that as strong evidence that it needed to be removed.  They admitted me on a Saturday night and I received 3 days of IV vancomycin.  My port was surgically removed on Monday.  Then the doctors wanted to rule out endocarditis, which is an infection in the heart that is readily caused by an infected port.  I first had a transthoracic echocardiogram, which is like an ultrasound of your heart through your chest, and no big deal, but it suggested that my heart MIGHT have been infected!  The results were inconclusive.  So then I had to have a TRANSESOPHOGEAL echocardiogram, or a TEE.  I had to be sedated for this procedure, because, just like it sounds, they put a big old wand down my throat to get up close and personal pictures of my heart.  It was like a colonoscopy, but the opposite.  This procedure was my ticket out of the hospital!  It showed that I did NOT have bacteria colonizing my heart, so no endocarditis.  The family came and picked me up and I joined the vacation on Cass Lake on Tuesday night.  I still got to enjoy 3 glorious days of vacation, during which I still had fevers and felt crummy.  So the infected port was not my entire problem.  But it was likely part of my problem!  While I was in the hospital, Dr. O called to say that my arm blood culture also grew the same bacterium.  So that was now three blood cultures showing the same thing--that's an awful lot of consistency to be a contaminant.  Ooo and fun fact:  my culture was sent to the state hygenic lab, and they determined that it was a species of Proprionibacterium, which is a common skin microbe. Relatives in this genus cause acne, but the one that was in my port is not an acne-causer.  They have been known to cause endocarditis, so whew I dodged a bullet on that one! 

A few other terrible things happened at the end of July, including the death of a beloved family member and the hospitalization of another, but there were also some beautiful things earlier in July.  My dear friend R came to visit, and despite my crummies we had a marvelous time.  We attended the town's 4th of July parade and the fireworks, and played games with the girls.  Then I went to see Hamilton with my dear friend D (I still owe you $ for the ticket, D, I haven't forgotten!).  It was SO good!  I didn't listen to the soundtrack beforehand or anything, so I went in blind.  That was totally the way to go!  I was blown away!!!

IMPORTANT REMINDER:  The Carnation Nation Appreciation Party is coming up on Sunday, August 12th.  2-10 pm, with kid activities from 2-5, and the band rockin from 5-9.  We'll have food, too. Cash bar.  My dad made a beautiful pdf file, but I can't get it to upload.  So, I'm just going to be ghetto and printscreen and paste:

Dude, that's not working either.  Enter powerpoint to transform the printscreen, huzzah!:

Elation

Updated to add a link to my revised pain scale.

I did it!  Huzzah!

Wait a minute, that's not nearly enough exclamation marks for the hbomb.

Huzzah!!!!!!!!!!!!!!!!!!!!

Let me start out by deeply and publicly expressing my gratitude to my friend M, whose last message to me before surgery was to remember my revised pain scale. Thank you, M, mother-of-triplets. I love you. (I revised my pain scale after my first mastectomy. That is when I learned 1) my previous notion of intolerable pain doesn't exist for other people; that is, I have a bit of a pain tolerance. Combine this with my aversion to drugs, and the result is me estimating my pain at a 2 or a 3 on a 10-point scale. After a mastectomy.  So vowed to revise my pain scale.)  My revised pain scale allowed me to recognize my pain as a 5-6, which elicited the perfect drugs. They reduce the pain down to a 2 (a real 2) and don't send my brain out to lunch. Perfection!

Also, I'm simply not in as much pain as I was with the previous mastectomy. I am not experiencing nerve pain, and this was the Worst last time. 

Finally, I have discovered a new pain medication that is going to make my sister rich and famous. He is baby Calvin, and when he smiles the mastectomy is erased. He's leaving soon, so hopefully the only ache he leaves behind is mild and in my heart. 

The surgery went well!  Dr. Surgical oncogist said that the sentinel (first) lymph node was NEGATIVE for cancer. A thousand huzzahs!!! She was nonetheless conservative and removed the sentinel node, a second node, and an inch of fatty tissue around them.  My armpit is the most sore of my wounds. 

I have nothing to report about the mastectomy yet. It will be a week before we know the pathology. 

The port was placed successfully. Huzzah! It is another purple power port, which is the same model as my previous port. Prior to surgery, a resident doctor freaked me out to the point of tears by saying that the vascular doctors would be placing my port on the left side.  But my mastectomy was on the right today!!!  She had all sorts of reasons that made clinical, theoretical sense, so I explained my real-life, empirical reasons: the skin on the left is very tight and is scarred from full chest wall radiation, up until yesterday I had a blood clot in the left jugular that May or may not be fully resolved, and my right side was already undergoing surgery. She conceded slightly, writing on the consent form "left or right" and agreeing to let the vascular surgeon make the call during the operation. Ah!  That's a bit nerve-wracking!  In the recovery room, the very first thing I said was, where's my port?  I am thrilled to report that it is tucked into its former home on the right. When I later saw Dr. Surgical Oncologist, she apologized for the apparent confusion, because she always intended for the port to go on the right. The information simply didn't trickle down to all of the folks interacting with me (seemingly dozens).

I'm spent, with nothing left in me to read and revise. Hopefully this has been sufficiently coherent and error-free.

I am humbled by and grateful for your support.  <3 and (>'')>

Cellular torture

My daughters have a small indoor tent made out of a material that is a strange hybrid of fabric and paper.  Dora the Explorer images are printed on each of the four sides.  They've had it for several years, set up in the toy room by the window as a special reading nook.  On Labor Day weekend I wasn't feeling tip top, but despite my lack of energy I wanted to do small things to make the weekend special.  One thing I thought to do was take the Dora tent outside.  Not to be bothered by collapsing the thing, I picked up the tent by the peak, which unfortunately elicited a ripping sound.  I awkwardly maneuvered the torn tent down the stairs, at which point Azalea pointed out a large tear down the back of the tent, reaching up to the ridgeline from the back door.  I reached for some masking tape, intending to fix the tent just enough to perform this final outdoor activity before depositing it in the trash.  With tape in hand I pinched the new seam, which readily flaked off a chunk of the paper-like fabric between my fingers.  I chose a different ripped location and grabbed again, liberating another hunk of the tent into my palm.  The fabric must have weakened over time, perhaps because of sun exposure at the window.  Before my small ones could throw a fit over their disintegrating play house, I embraced the tent, tear and all, and tossed it into the yard.

My brain on taxotere is the fabric of the Dora tent.  Weak, fragmented, and orange.  Each morning I toss myself into life and hope for the best.  

Fortunately I am feeling a little better every day, and I will continue to get better in the absence of further cellular torture by chemotherapy.  At night I send my healing thoughts to my brain, taping up the pieces of my mind.  This week I have caught myself making some coherent thoughts, so I thought I'd attempt this blog post.

Tomorrow we make the drive to the other town for my pre-mastectomy procedures.  At 2pm I am having vascular pictures taken.  These are for the doctor who is going to be placing my port.  I used to have a port, but I had it removed after being cancer-free for almost 3 years.  Dr. Oncologist chose not to re-install my port for the current cancer treatment for numerous reasons.  However, now that I am looking to be infused with Herceptin and Pertuzumab every three weeks for the rest of my life, I asked if I could get another port.  I figured I could get it installed at the same time as my mastectomy.  All of doctors on my team thought that this was an excellent idea.  My port will be placed in exactly the same location as my old one:  chest wall, center-right side, just below the collarbone.  A doctor whom I have not met yet will come into the operating room after my mastectomy and hook me up.

At 3pm tomorrow I will be injected with a radioactive tracer.  This will be injected into the breast cancer.  On Wednesday the doctors will be able to follow the trail of radioactivity to see which lymph nodes to remove.  This procedure is called sentinel lymph node dissection.  I didn't have this before because it is not recommended in cases of inflammatory breast cancer.  It is recommended for ductal carcinoma in situ, which is my current diagnosis.

My surgery is scheduled for 7 am on Wednesday.  I am to report to the hospital at 6am.  My husband, parents, sister, and mascot (Calvin the Cure) will be there.  I will stay in the hospital for a night or two.

On my previous mastectomy eve, my college friends booked a room for Ian and I at a fancy, contemporary hotel.  I decided to do the same this time, for luck or something like it.  I'm not superstitious.  It just seems like an appropriate night to be a tiny bit spoiled.

I am grateful to not have any downtime between my last chemotherapy and this surgery.  It's true that the surgery will keep my healing energies busy, and that my healing energies could use a break.  However, I feel that it will be easier to maintain my healing routine than to be teased by a break from healing only to be plunged back into the fray at a later date.  Besides, I don't want the cancer to think that I've gotten complacent.  Kick it to the curb!

48 hours from now my cancer will find itself excised from its happy Heather bath.  It will be slapped onto a lab technician's benchtop, fixed in formalin, set in paraffin wax, and sliced into thin preparations for a pathologist to scrutinize under a hot, microscopic spotlight.  I am not a vindictive person, but after all of the pain that cancer has caused me, I delight in the cellular torture that is about to be inflicted on it.    

It ends where it began

I began by treating it like a normal day.  I helped the kids get dressed, I ate some breakfast, I drove to work via Azalea's elementary school.  I signed some timesheets, I invited reviewers on a manuscript, I labeled baggies for tomorrow's fecal sample collection.  Then I came home for lunch and walked with Ian to the clinic, which started the day all over again.

The General Surgery waiting room is one of the best waiting rooms at the clinic:  a view of the atrium, vintage National Geographic magazines, HGTV softly streaming on the television, and rows of empty chairs.  I was reminded of my previous visits to this waiting room over three years ago.  The first visits, back in the "it's certainly not cancer" days, were pleasant enough, but the last visit on the day before diagnosis had a certain amount of apprehension and doubt.  In drawing myself back to that day I began to feel the gravity of the present day.  I was beginning to explore these thoughts when I was called to the procedure room.

Ian walked back with me although he did not intend to stay back there.  A nurse checked me in and gave me a cape.  I changed into the cape.

Dr. Surgeon did not keep me waiting long.  When I saw Dr. Surgeon I had so much to say to him that I couldn't say anything at all.  Dr. Surgeon is the one who found the cancer, the one who put my port in, and the one who shaved his head for my good luck.  I wanted to thank him for giving me my life.  Instead I gave him a hug and a grimace-smile that probably looked like I was teasing about something but instead meant that I was trying not to cry or choke or laugh.  He made a sweeping gesture at the procedure table, inviting me to lie down and get started.  He and the nurse prepared the field around my right chest, surrounding my port.  He started to talk to me about the book he's currently reading, which happens to be my favorite book in the universe, Cutting for Stone by Abraham Verghese.  This reminded me to share my favorite quotation:

"Would that I had the chance in my sons' lifetime and my own to one day explain to them all the forces that moved me."  --Abraham Verghese in his memoir, The Tennis Partner.

But I didn't say it because I still couldn't talk.  You see, saying these words would have been poignant because Dr. Surgeon, Dr. Oncologist, Dr. Surgical Oncologist, and Dr. Radiation Oncologist are the ones who gave me more chances to explain to my daughters that which moves me.  I had no hope of sharing this on account of the lump caught in my throat.  I'll have to write a note.  I'll have to write each of them a note.

He numbed the area with local anesthetic, but the tugging combined with the sounds of calculated flesh-cutting forced me to stop talking.  I employed some deep breathing and took myself away.  

Once the incision was made, he simply snipped the few stitches that were securing my port to my muscle and pulled it out.  I felt a bit more tugging as the 8 inches of cord slipped out of my superior vena cava, and even more tugging as he stitched up the blood vessel encasing the port (because the superior vena cava is truly a superior vein and over the years had generated a cellular tube around my port cord).  This unnatural vessel-around-the-port-cord is actually incredibly useful for the healing process because without the cord inside, it collapses on itself and sticks together, preventing my superior vena cava from bleeding excessively.

He dropped my port into the baggie I had brought, and Ian placed it in the Stride Rite shoebox (aka biocontainment and a secondary container).  This thing is too precious to be incinerated with the other biohazard waste.  I'm keeping it along with all of my other cancer mementos.  

This is my port, displayed adjacent to a nickel and a crayon for size references.  The dark purple area in the center of the port is firm yet permeable material through which needles were stuck for blood access and chemotherapy administration.  The part of the cord just above the purple port is where my superior vena cava crafted a vessel.  The cord next to the crayon is the part that dangled in my bloodstream.

I got dressed and sat down in a chair next to the procedure table.  Ian had stayed in the room the whole time (he said he didn't see anything) and was quietly supportive.  We tried to hold hands but it was an awkward angle, location, and mood.  After a few moments he gently pointed out that we were free to leave whenever I was ready.  I thought I was waiting for something--outpatient wound care, pink follow-up slip, closure of any sort--and felt foolish for lingering.  

When I got home I wasn't sure what to do with myself.  I was a pot of emotions with a dash of pain.  I distracted myself with a trip to the craft store to pick up a few art supplies for the girls.  Then I picked up Eleanor from preschool.

My sweet little Eleanor.  She remembered that today was the day that I was having my port removed.  She ran across her classroom and asked me if my port was gone.  She stood up on her tippy toes and tried to touch the place on my chest where my port used to be.  She asked if she could see my owie.  I said yes to everything and tried not to choke for the second time today.  I flipped my sunglasses off my head and over my eyes so that she wouldn't see that tears were forming in my eyes.

At that moment I realized that Eleanor never knew me without a port.  When she was little and learning her body parts she would point to mommy's port and daddy's port, and we'd have to explain that only mommy had a port.  No one else in her life had a port.  Now mommy doesn't need her port and so it doesn't have to stay in there anymore.

At dinner we continued the conversation about my port, and this inspired questions about my nipple, namely whether I can keep the one I have and whether I'll ever get my other one back.  We talked about keeping healthy body parts and removing sick ones.  We also talked about replacing useful body parts like legs, but how my breasts already served their biological purpose and so I don't need to replace the one that I lost.  I'm glad that my daughters ask me questions.  I find it easier to answer their questions than to strike up random conversations about all these things that I've done.

Then I hopped on my bike to attend what ended up feeling like my third day today.  Yoga.  This was my first night of yoga class in almost 2 months due to a brief lapse in the schedule.  I decided to attend class with the intention of skipping strenuous poses while engaging in meditation.

Today's class was focused on energy and on moving energy around in the body.  I tried to meditate my energy away from the pain of my new incision, away from the fear of cancer ever recurring, and away from the lump that had clogged my throat for most of the day.  I moved energy toward the bliss in my heart center.  As the energy breathing up and down my spine dissolved the lump in my throat, the throat energy worked its way upward and started leaking out of my eyes.  I didn't want to be distracted by the leakage so I tried not to notice it.  With moist cheeks I sat in the final yoga pose, bending for a bow not to the instructor but to myself.  Yes, it's true that I was the weird lady who cried through yoga tonight.

Afterwards I wanted desperately to thank the instructor for a beautiful class.  For the second time today I couldn't speak, but I think I avoided the grimace-smile this time.  Guess I'll have to rely on another note.  Fortunately my prose is kinder than my oral skills.  

I was powerless against my tears for the entire pedal home.  By the time I entered the house I had managed to divert the leaking energy from my eyes to my hands.  I worked with the girls on a new art project, which required me to poke holes in small cardboard boxes that will later become pipecleaner-hair monster masks.  I think it's appropriate that the last of today's throat energy will be manifested as colorful pipecleaner hair on monster masks.

And to think that I was going to go back to work after the procedure today!  Not because I'm a work-a-holic, but because it didn't occur to me that I'd need the afternoon off.  Ha!  That was so yesterday.  After today I think I need a vacation.

Save the date: Port Appreciation Day

Today was another 3-month checkup with Dr. Oncologist.  I don't exactly dread these visits because I love Dr. Oncologist and it feels good knowing that she is still keeping an eye on me.  But it is not with a still heart and dry palms that I sit in my gown waiting for her to enter the exam room.

We engaged in the usual updates--my throat, the kids, my chest, the husband, my lungs, the job.  Then she made an usual statement of fact, "It's been almost three years, you know."  Almost three years since my diagnosis, almost two years since the end of treatments.  Yes I know this.  Of course I know this.  These dates are forever burned into my mind.  But for her to state that she also knows this was a departure from her usual style.  She wastes breath on neither obvious nor ambiguous statements, and this particular phrase qualified as both.  Then she volunteered what I have been waiting almost two years for her to declare,

"I think we should get that port taken out."

The bells are ringing!  The birds are singing!  YES we should get this port removed!  NO we will never be using it again!  YES I am free in September!  NO I don't want any of the other surgeons except for Dr. Surgeon!  YES 1pm on September 9th will work!  NO I don't need an appointment reminder card because you have just created for me another date that will live in me forever!

I do not mean to diminish the significance of all of the beautiful things that the port symbolizes, such as my Survival.  What I mean is that removal of the port will symbolize the end of cancer treatment.  Its absolute completion.  My cancer could not be treated without a port, so if I no longer have a port then it must be accepted that I no longer have cancer.

I don't have cancer.

I won't have a port.

I love life.

I am delighted to live it some more.

Flush

On Tuesday I went to the Oncology office to get my port flushed.  Have I mentioned this yet?  In brief, I'm no longer using my port (huzzah!) but I have to keep my port until the odds improve that I will remain cancer-free (boo!).  An unused port requires routine maintenance so that no yucky blood clots or infections develop in the port.  So about once a month I need to pop in and get my port flushed.

It takes about as long as an oil change; most of the time is spent waiting.  

I have previously documented my port and its usage for chemotherapy.  But thankfully it's been awhile, so I thought I'd document the flushing procedure.  First, access (poke) the port with an L-shaped needle.  Then draw liquids out of the port before flushing.  This is because a small amount of heparin sits in the port reservoir 24/7 to prevent blood clots in the port, but I had heparin-induced thrombocytopenia back in March.  This means that heparin indirectly causes a decrease in my platelet count.  I probably don't need to worry about it any more, because I probably have enough platelets to spare now that I'm recovered, but I just don't feel like doing something I know my body hates.  You never know when you'll need all of your platelets!  

So I always ask the nurse to draw off the heparin before flushing my port.  Sometimes something is stuck in there (yuck!) and I have to do the Y-M-C-A to get it unstuck.  "Gross, what's stuck?" you may ask.  Well, perhaps my body tried to "heal" the tiny opening in the port tube, thus blocking it temporarily.  Perhaps the port tube is stuck to the side of my superior vena cava.  We're not quite sure.  Only once were we unable to will it unstuck, and in that case we just proceeded to flush the port with saline.  The force of the flush is always sufficient to unstick my port, it's just on the initial withdraw that the challenge sometimes presents.  

After the withdrawal of the heparin comes the flush with saline.  Ten to 20 milliliters (I'm such a nerd that I don't even know how many ounces that is, or perhaps a true nerd would have the conversion memorized) is all it takes.  Finally, the nurse gently injects a mere three milliliters of heparin into the port reservoir before removing the needle.  

I've decided not to add the port flush pokes to my poke tally.  I feel satisfied with my year-of-cancer-treatment poke tallies, and don't want to artificially inflate its meaning with port flush pokes.  

But the real point of this post is to admit how WEIRD it was to be in that oncology waiting room!  I feel good, I have a full head of hair, I'm not being treated for anything, I'm smiley.  The further I get from all of that cancer business, the less amenable I am to be in a place having to do with cancer treatment.  It didn't bother me for my December flush, but I was slightly bothered this time.  I even found that a decorative quilt in the reception area that I so adored now makes me slightly queasy.  All of this is an interesting phenomenon that we must keep tabs on, but perhaps I've said enough for now.        

Perspective

When I was diagnosed with cancer, I had nothing but dread for chemotherapy, surgery, and radiation.  I was filled with fear, but I have since learned that this fear was misplaced.  Where I feared pain, I should have feared the cancer itself.  Where I feared my own suffering, I should have feared the suffering of my children were I not to survive.  What caused this change in perspective?  Time.  Wisdom from fellow cancer patients imparted in the waiting room.  The possibility of a metastasis in T9.

I spent weeks dreading the mastectomy.  Now it is upon me and I am excited.  I no longer fear my own suffering, nor do I fear a life without a breast.  I am terribly ready to be separated from this ticking timebomb.  My imminent suffering will be brief relative to the life ahead that it will afford me.  Also, my amazing college friends got me a sweet hotel room for the night before (see right) that includes a linen upgrade.  Ooooh!       

I have also spent a lot of time disparaging my port, or "port" as I often referred to it.  I will no longer talk smack about the port.  This past week I really started to appreciate the significance of my port (see? now it's MY port and not THE port) and what it does for me.  I don't even want to know how many sticks I would have had for those platelet transfusions if I didn't have a port.  A dozen is certainly a conservative estimate.  Instead, they put a needle in my port at 4:30 pm, and that same needle stayed in comfortably and painlessly until after the spine biopsy the following day.  One needle, one stick, allowed my blood to be drawn at least 4 times, steroids and morphine to be administered at least 3 times, platelets to go in 4 times, and probably other things that I'm forgetting.  Sometimes I elect to use an arm if the port has been poked twice in a week already, but for the most part I have become an exclusive port fan.  Three cheers for ports!  

Finally, my hair is starting to grow back and I thought I'd reflect on being bald.  This is not something I particularly dreaded, and I don't think that my perspective has changed.  I would say that being bald is inconvenient sometimes because it complicates my body's temperature regulation.  I would also say that I miss my hair because it was kind of pretty and my girls liked to play with it.  The fun things about being bald are rubbing my hands on the stubble, putting on backpacks without catching my hair in the straps, not having the wispy static-electrified hairs in my face in the winter, and cooling off quickly after a hot flash.  But I am looking forward to the return of my hair, however it decides to grow in.   Please go here or use the photo link at the right to see more pics of my baldness in action.        

Poke tally:

port  23

right arm 9

tummy  6

left arm  6

left breast  1

superior vena cava 1

T9 vertebral body 1

Blue machine-->Puke machine

I think I set a new toughness bar for myself today.  Walk with me through my morning and early afternoon:

4:30  diarrhea
7:20  diarrhea
7:30  dress Azalea
7:40  change Eleanor's diaper
7:45  puke in trash can
7:50  dress Eleanor
7:55  dress myself
8:10  lie on floor in toy room
8:20  walk to chemotherapy
8:35  have blood drawn from "port" (needle remains in "port" until 2:30 pm)
8:40  take one sip of lemon-lime gatorade
8:41  run to bathroom
8:41:20  puke in toilet while there is a needle in my "port" (I find this to be a significant contribution to my sense of my own toughness, although puking with a needle in one's "port" is actually no different than ordinary puking)
8:44  return to waiting room
9:00  move to exam room
9:20  meet with Dr. Oncologist (breast red spot has really decreased now, huzzah!).  She calls me something slightly endearing and complimentary, but now I can't remember what it was--maybe "How's my tough patient?" or something like that.  We discuss the possible causes of my ailments, and I propose that they are directly related to the Naked-brand Blue Machine juice I drank the night before.  It technically wasn't supposed to expire until March, but it had been opened for probably two weeks.  No one's mouth had touched it, and none of my five senses detected microbial contamination.  So I drank it.  It was just what I needed at the time, but I believe that it turned into my worst enemy today.  Also, Ian was sick with a sore throat all weekend, the girls have been snotty for days, and I was starting to get a scratchy throat on Tuesday.  Dr. Oncologist therefore checks me out for a possible cold or throat issue, but it is gone today thanks to lots of green tea and the good things in Blue Machine.  We determine that I have low platelets, no cold, no fever, and that something in the Blue Machine turned me into a puke machine.  I am therefore cleared for chemotherapy.
9:50  move to chemotherapy room 8 (the best one, with the biggest window and the most plants)
9:55 diarrhea (in the shared bathroom, which is always a bummer when one is having troubles)
10:10  chemotherapy begins
10:15  drink five sips of green tea
10:30  eat half of a graham cracker square
10:35  watch one episode of Friends
10:55  Ian heads home to eat lunch with Lori and the girls
11:10  (approximately) I fall into a deep, Benadryl-induced sleep
12:00  (approx.)  Ian returns
12:15  (approx.) I ask for more blankets (those fluids come into my body at room temperature, which is quite chilly from the perspective of a superior vena cava!)
Times unknown:  The nurse changes my IV bag with each new drug.  I scarcely wake up.  At one point I hear a different nurse track down my nurse and say to her that the "little girl" needs her IV changed.  I haven't been called a little girl in a very long time.  
2:30  Nurse removes needle from "port"
2:35  Ian and I bundle up against the frigid day and slowly walk home.  
    
I might not be tougher than you, and it wasn't quite my toughest day so far (there are several that tie, and they usually occur 3-4 days after hard chemo day), but it sure sounds impressive, doesn't it?

I ate a light dinner tonight and am keeping it down just fine, probably thanks to the million different anti-nauseas that I am on for chemo.  I only regret that I didn't get to eat my "last supper" breakfast that I like to have on hard chemo days.  There's always next time, which will be the last time.  Huzzah!

A day in the life

Today's post is a photo narrative of a chemotherapy day, such as yesterday.  Please click here to see all of the pictures and captions.  Below are two highlights.

As promised, the port.  In the album, there are "action" shots of the port as it was used yesterday.  

Yea, I have a problem with setting the date on my camera.  Below I am receiving chemotherapy in a private room.  Yesterday I knitted a scarf for Azalea (Holly, I'll work on your blanket next time).  More pics and details of the whole process can be viewed here.  

And look below for how my white blood cells have rebounded from the first round of yucky chemotherapy (2 weeks ago yesterday)!  Thank you, Neulasta!

In other news, I am feeling good.  I have two new side effects of chemotherapy that are, shall we say, opportunistic infections, so now I have two new prescriptions for those.  My aunt bought me a pill box, which is really wonderful, but it's slightly horrifying that I need a pill box.  The previous side effects of brain and digestive tract fog have subsided. I still have a bit of fatigue, but is so mild that it is impossible to distinguish cancer fatigue from living-with-two-small-children fatigue and time-change fatigue.  Today, for example, the fatigue really only hit me after I gave my 3-year-old a piggy-back ride for six blocks.  But it is awfully convenient to blame the chemo.  

Hey, that wasn't so bad

I'll start by reminding you of my chemotherapy program, and for the first time I have enough energy to get off my butt and look up the names of the drugs:  *week 1, Taxotere, Carboplain, and Herceptin; week 2, Herceptin; week 3, Herceptin*; repeat between * six times, for total of 18 weeks.  Today was the week 2 treatment, and the only side-effect preventers that I was given were 2 tylenols and 1 benadryl by mouth.  That's a good sign right there, in contrast to last week when I was given an hour's worth of side-effect preventers by IV.  I am delighted to report that I don't think I am feeling any side effects of today's treatment.  I think I am still feeling the residuals from last week (a bit of digestive fog and a bit of fatigue hanging on), but *I am better than yesterday*; and I hope to repeat between * until the next big dose.

It has come to my attention that some of you are confused about the mechanics of my port.  All I have to say to that is, exactly.  When the surgical evidence has dissipated, I promise to do a port photo-shoot for you and launch a port-renaming contest.

I did indeed go to work for two hours yesterday.  It was glorious to be surrounded by my colleagues and friends, most of whom I hadn't seen since my catapult into cancer less than two weeks ago.  I also spoke with my boss about how to balance work, life, and cancer.  He is so kind and wonderful, and assured me that he will work with me however is needed.  The two big things are 1) signing up for the leave-transfer program, which will allow folks with extra vacation time to donate that time to me because I will run out of my own vacation time very soon (this mechanism of leave-transfer could possibly keep me off of disability for awhile), and 2) working around my health in the event that I get an interview.  That's right, I said interview.  In mid-October I applied for a full-time scientist position within my current unit at the USDA, a position I really really really want and am really really really qualified for.  I'm very hopeful that I'll get an interview, but that interview will likely be sometime around Thanksgiving, and I will obviously still have cancer and still be undergoing treatment.  We talked about the scenario where I get an interview, and he said he'd be willing to work with me to interview on a "good" day.  So, a big sigh of relief on the work front, which translates to a huge sigh of relief on the paycheck front.  Now I just need to figure out how to actually get work done and prepare for the interview, but I'm feeling so much improved from yesterday that I have high hopes for productivity next week.  By next week I mean tomorrow, because Wednesday is the new Monday in my world.  

I'll leave you with an anecdote about my surgeon.  My husband Ian saw him in the hospital today, and where Dr. Surgeon previously had a head full of hair, he now has none.  Yep.  He shaved his head.  Ian commented on it and the surgeon said that he shaved his head for ME, and that it's the best good-luck charm you can give to someone.  Ian was already planning to shave his head when my hair actually falls out, so that I don't have to be the only bald person in my dad's wedding pictures (yikes!) later this month.  I suppose this is starting to sound like I'm lobbying for you all to shave your heads, but I'm not.  The purpose of this anecdote is to suggest that you send some of your positive thoughts and prayers to yourselves, including Ian and Dr. Surgeon, for being the unique and incredible network of people loving and supporting me.  I couldn't do this without you!                    

Poke tally:

left arm  4

right arm 3

"port"  2

left breast  1

superior vena cava 1

tummy  1    

VicoDO or VicoDON'T

Dinner:  lettuce salad with avocado and cucumber with balsamic and olive oil, two pieces of cold pizza, an orange, a glass of milk, a homemade chocolate chip cookie, and water water water.

Activities:  cuddle with Eleanor on the couch, try and fail to play a game with Azalea, watch part of an old-school episode of SNL (hosted by Calista Flockhart with musical guest Ricky Martin, YES), read, discuss books with the lovely Statia, help put jammies on the little nuggets.   

Mood:  I'm told that I am looking and acting better than I was when I got home at 2:30.  That's good.  However, my brain feels fuzzier and my "port" hurts more.  I'm tired, but not sleepy.  I am currently wrestling with whether or not I want to take a vicodin to ease the discomfort, but maybe extra-strength tylenol will suffice?  I'm a tough-it-out sort of girl with few vices:  I took no drugs during childbirth, but I do love a good alcoholic beverage once in awhile, as many of you can attest to (insert favorite hbomb memory here).   

The vicodin awaits, lurking in a white pharmacy bag on the dining room table, preying on my fear of what tomorrow will bring.       

It's alive!

I have a port.  Above my right breast.  I can't wait to show you some day.  It is a quarter-sized, ~1-cm thick plastic do-hicky perched on a rib just under my skin.  In the center is material analgous to artificial cork, and that is where the majority of my chemo-related needle sticks will take place.  You can put stuff in or take stuff out--how versatile!  From it is a long (10 cm?) skinny irrigation-looking tube that goes into my superior vena cava.  The site of the port is moderately sore, but no need for the vicodin yet. 

My life-saving surgeon put in the port, and I totally sobbed uncontrollably when I saw him this morning.  It was ridiculous.  He gave the anethesiologist a knowing look, at which point anxiety drugs were offered.  I declined, explaining that it wasn't the surgery itself that I was upset about, but rather the whole ball of (cancer) wax.  As promised, I pulled myself together and everything went great.  I didn't feel, see, or hear a thing, which is as it should be in my world. 

In the fog of after-surgery I was giving everyone hugs and making playground playdates.  Nice.

He left the needle in the port and I was wheeled right up to oncology.  I had at least three hours of drips, and it all went through my new port.  I still don't have the names memorized, and I'm not going to look them up, but here's a layman's summary of my drips:  30 minutes of anti-nausea, 30 minutes of benadryl + tylenol + dexamethasone (anti-nausea), 60 minutes of chemo 1, 60 minutes of chemo 2, and 30 minutes of chemo 3.  Then my port needle was removed (yowza, that is some FIRM cork in there) and we blustered home in the appropriately dramatic weather.

What to expect:  bone-crushing fatigue for 4-5 days, then hopefully an upswing until I get this treatment again in three weeks.  Lots of other possible side-effects, but I won't belabor those.  We'll just have to see.  

Time to rest and cuddle the ladies.

Poke tally:
left breast  1
left arm  4
right arm 3
superior vena cava 1
"port"  1

A plan for the first quarter

The good news is that my brain, bones, and organs appear to be cancer-free.  The left breast, as suspected, is full of cancer, and so are some neighboring lymph nodes (boo!).  The right breast is questionable (boo again!).  We'll repeat all of the scans before surgical decisions are made.  

I suppose there's no additional bad news other than the cancer itself (which is estrogen receptor negative, progesterone receptor negative, and H-2-new positive [I have no idea how that is really spelled, but that is how I hear it]).  H-2-new positivity is a good thing because there are great drugs against that, apparently.  Unfortunately I was robbed of my time to celebrate the good news by being launched into a lengthy chemotherapy briefing, which was a bit traumatic.  Tomorrow I will have a port put just under my skin on my chest, and that is where my injections will take place.  I don't know about you, but when I heard "port" I thought that there would be this thing in me allowing free passage of fluids and preventing further pokes.  Pop the lid off and we're good to go.  That is not true.  There will be a thing in my chest, under the skin, and it will facilitate the passage of fluids from needle to vein; there will still be a poke.  I think people with a different perspective, such as having frequent pokes related to diabetes, would be thrilled with a port, but I myself am still getting used to the idea.  Call me old-fashioned, but I am already looking forward to the removal of the port.  

So, port at 6:30 am.  Then chemo round one at 10:30.  Chemotherapy will last 18 weeks, plus the continuation of one of the three drugs for a year.  Three drugs once every three weeks, and one of those three drugs every week.  The every-week drug shouldn't be so hard on me, and in fact won't affect hair loss, but the other two sound rather unpleasant, including swift hair loss.  After the chemo, all tests will be repeated and the extent of surgery will be assessed.  Then radiation, but we didn't even talk about that (or surgery, really) today.  There's no way to know how I personally will be affected by the chemotherapy, but I was told that the fatigue is real and Ian already picked up my anti-nausea medication.  I'm sure that you have many unanswered questions, but that's about the best I can do tonight.         

Poke tally:
left breast  1
left arm  3
right arm 3