Friday, October 25, 2013

Repost: Evolution of a scar

I've done several posts on reconstruction and body image, and this is one of my favorites because it touches on almost all of the variables that I have thought about at some point.  I still have no desire whatsoever to reconstruct my missing breast.  My scar still changes, but like my emotional recovery from cancer it is no longer acute.  

I've been doing some reading lately about breast reconstruction.  Not about the gross science-y stuff about reconstruction, but the social and psychological stuff.  I'm not at all considering reconstruction, but now that I'm not in the thick of cancer treatment I've found myself curious about why women get reconstruction.  Yea yea, isn't it obvious that the appearance of two breasts is better than one or no breasts?  This is probably what I would have thought, if I had thought about it Before.  But now that I've journeyed through the cancer treatment gauntlet, I'm not so sure.

First of all, surgeries are both painful and a pain in the a$$.  Everything hurts, and continues to hurt long after the hurt is supposed to be gone.  Electing for surgeries that are not a necessary part of cancer treatment is currently beyond my capacity.  

Secondly, if I was uncomfortable with artificial body parts before, why should I suddenly be more comfortable now?  Especially with a relatively expendable body part?

We all know, or at least have learned by now, that I am a practical person.  The above viewpoints should therefore come as no surprise.  However, I am in full support of other women choosing reconstruction.  I am therefore trying to learn why they make this choice.  My purpose is not to see if I'm right or wrong, but to learn about these other viewpoints.

In my small, non-scientific survey, I have found that the perception of others is the primary reason that women choose to reconstruct.  I have determined this by reading dozens of anecdotes in numerous books. Most women want to look good (normal?) in clothes, and they want to be sexually attractive.  What I find interesting about this is that it seems to me that retaining attractiveness is at their own expense, both in terms of potential medical problems with the reconstruction and the fact that the reconstructed breast often has no feeling.  Did you know that latter fact, about the loss of feeling?  It seems obvious, but I never thought about it before and I didn't know that.  It seems to me that if I had no feeling in my reconstructed breast that that would be a constant reminder that it was for someone else and not me.  Call me selfish, but I would hate that.

The other way of thinking about "wanting to look good in clothes" is a positive self-image.  Many women state that they just don't feel like women without the appearance of two breasts.  This underscores the importance of continued improvements in reconstruction technology and healthcare support.  Also, mastectomy is not the only condition that might lead someone to opt for breast work.  Reconstruction is a good choice for women who may psychologically struggle otherwise.

I'm sure there are others, but I've only read about one woman thus far with an attitude similar to mine.  She thinks of herself as an Amazon, a strong and active woman who can now execute her life with improved physical prowess in the absence of a breast.  I don't yet see myself as an Amazon, but I can relate to the improved functionality of my new physique.

Also, I'm learning to see the beauty in my asymmetry.  I hold my head high and walk around with confidence.  My spouse constantly affirms my beauty.  I have bought a few new shirts that are asymmetric and complimentary.  I can now see asymmetry everywhere in the world, and it has unusual beauty.  I truly do not feel that I need a reconstructed breast.

My scar itself is also remarkable.  It keeps changing.  Will it ever stop?  It started pink, then turned to white (perhaps because of radiation?), then pink with white in the middle, then red with white in the middle, and now a deep red.  It's slightly raised in some places, yet exceedingly smooth in others.  It itches sometimes.  The evolution of my scar is symbolic of the psychological journey about breasts, sexuality, and beauty that I am on.  Always interesting and never done changing.            

Thursday, October 24, 2013

Repost: Believe in things you don't understand

I originally wrote this post during radiation therapy.  I chose to repost it because it's upbeat and informative.  It was tough to chose between this one and the one where the owl omen appeared in my backyard, but see how I managed to sneak in a link so that you can find it own your own.  Speaking of sneaking stuff in, happy 33rd birthday to me today!

As I was hoping last week, I have indeed adjusted to this crazy radiation schedule.  It is not nearly as exhausting as it was last week, although I find it hard to believe that it's only been one week.  The electron doses started on Monday and just take an extra few minutes.  Well, the electron dose itself takes only ~20 seconds, but it takes a minute or two for the technicians to get things set up.  My skin is starting to turn a little bit pink, as predicted.  Still not red.  Still not sore.  Huzzah!

In other health-related news, I have 100% range of motion in my left arm.  It is not pain-free, in neither the nerves nor the muscles, so I will continue physical therapy for a bit.  I do my exercises every day, and I can feel improvement every day.  I've started to forget that I used to bump into a breast when I reached across my body.  I've even grown accustomed to the burning nerve pain in my arm.  It's sensitive, but not crippling.  Again, huzzah!

While I was getting zapped today, I was thinking about all of the particles that were poking through my skin.  I couldn't feel these particles, but I nonetheless thought of my poke tally.  Was there a way to calculate how many particles (photons or electrons) were "poking" me in a single dose of radiation?  So that I could start a particle poke tally?  I asked this question of one of the fabulous technicians, and she introduced me to the physicist.  He seemed delighted to talk shop with someone and explained that the radiation machine is calibrated by measuring how it ionizes a known amount of air.  This is then converted mathematically into the ionization of an amount of liquid, liquid being of interest because a human body is ~60% liquid (today mine is ~70% liquid due to the incredible amount of snot I'm producing; thank you sweet Eleanor for giving me your cold).  This is further converted to the unit Joules per gram, and he said from here we could calculate exactly how many Joules-per-gram of radiation I am receiving in a single dose.  It sounded like it would take a fair bit of effort on his part, and because this is an unnecessary exercise I said no thank you.  He further explained that the machine is tested every morning to see that it functions within good parameters, and if it ever falls out of those parameters he re-calibrates it with the air ionization thing.  He also said that he belongs to some Houston-based national radiation calibration organization and follows their calibration protocol annually.  I came away from the discussion with something much better than a particle poke tally:  confidence in the machine and the people running it.  But part of me still wants to know something quantitative about this radiation rather than the empirical "20 seconds of photons here, 10 seconds of photons there, and 20 seconds of electrons there."  It's a little hard for me to grasp, but I guess I'm just biased towards whole atoms.  

It has been a cold, rainy, sleety day here today.  To combat the cooped-up feeling, the girls and I had a disco dance party this evening.  Cinderella even made an appearance:

Pandora radio was our DJ, and one of the songs that popped up was Stevie Wonder's Superstition.  I know I've already posted a Stevie Wonder song, but this one really resonated with my thoughts after the discussion with the physicist today.  Radiation at times feels like it could be superstitious:  I lay there with my arms above my head while a machine waves an over-sized magic wand above my former cancer.  Bibbity bobbity ZAP! and the cancer is gone.  I know it's not superstition, however, and that's why I've found another connection between this song and radiation.  The clavinet riff, which is the song's trademark, sounds like the buzzing noise made by the radiation machine when it is zapping me.  I wish radiation were as funky as Stevie.  Below is the jam-session version of Superstition, performed on Sesame Street.  Smile.    

Wednesday, October 23, 2013

Repost: Stages

Here is another blast-from-my-past to celebrate IBC awareness week.  I wrote this post while recovering from the mastectomy.  I like this post because of the way I broke down the healing process.  It became the best way for me to cope with the dynamic interplay of pain, drainage, numbness, and fatigue.  

Okay, this healing-from-a-mastectomy-and-axillary-lymph-node-removal business is going to take a lot longer than I realized.

I have resumed taking the Tylenol 3.  On Friday my pain took a turn for the worse and steadily increased all weekend.  Today is the first day that my pain is as low as it was last Thursday.  The only explanations that I've come up with are that 1) perhaps it took several days for the excellent surgery drugs to totally wear off, and 2) I have lots of numbness in the affected area that is reducing with time, allowing me to feel what's really going on in there.  Regardless, Tylenol 3 is only half of the solution.  The other half is to sit on my tush and prop my left arm on a pillow.  This latter half is tricky because it is surprisingly difficult to actually do nothing.  My legs aren't broken and I'm not chemo-fatigued.  However, it turns out that healing from such a major surgery takes a lot of energy, and doing things with parts of my body seemingly independent of my upper left quadrant actually require efforts from that department.  Even standing still increases my pain and fatigue.  Getting back to normal is just going to take more time than I imagined.

To resolve the disconnect between my actual and expected healing rates, I have started to think about my healing in terms of stages.  By breaking this massive healing process down into achievable bits I am hoping to increase my patience with the process.  I don't yet know what all of the stages are, but here's a brief sketch of the stages that I have experienced:  1) surgery, 2) surgery detox, 3) TLC of the wound and drains (I have two long tubes running from the inside of my wound to two bulbs that I pin to my shirt or pants.  The purpose of these drains is to collect fluid that would otherwise cause swelling in my wound.  The drains have to be emptied twice a day, and the point of entry into my body has to be protected to prevent infection.  They are annoying and disgusting, to say the least).  Here are the upcoming stages that I am anxiously awaiting:  4) drain removal, 5) steri-strip removal (we've controlled the blistering with Benadryl but the queue of strips is still quite itchy), 6) physical therapy, 7) radiation.  Part of my impatience with the healing process is due to my lack of knowledge about it.  I wish I had a mastectomy manual.  The other part of my impatience probably results from spending all winter in chemotherapy.  I am so sick of being laid up.

In happier news, you should see my hair.  It is growing almost as fast as the cucumbers we started from seed indoors.  Its varying lengths make it oh so soft.  Just a few baldish spots to go.

Also happy news is that my brother won't need surgery on his shoulder.  He will wear his left arm in a sling for 6-8 weeks until the clavicle heals, but the shoulder itself is fine.

The sun is shining and I'm still smiling.

Tuesday, October 22, 2013

Repost: The 60th day

To celebrate IBC awareness week, I decided to repost some of my favorite writings from during cancer treatment.  This piece is from near the end of my hard chemo treatments.  Although I wasn't feeling my best physically, I was emotionally delighted.  I think that comes through here.   

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.        

Monday, October 21, 2013

When in doubt, rule it out!

I just realized that this is the 200th post on SGPC.  How fitting that it should happen at the start of IBC awareness week!  Thank you, everyone, for continuing to read this blog and supporting the author.  This continues to be a fun and important outlet for me, even though at times I don't know what to write about.  :)

Happy 3rd annual Inflammatory Breast Cancer Awareness week! Can you believe that it's been two whole years since the first IBC awareness week in Iowa?  I can't.  The first IBC awareness week observation occurred within a few weeks of my last herceptin treatment.  Wow.  I'm almost a two-year cancer survivor.

The IBC awareness week started pretty simply enough.  My sisters and cousin initiated the paperwork to have the governor proclaim the observation. A whole bunch of us went to the capitol to watch the governor sign the proclamation.  It was a remarkable event because it occurred at the end of a long journey through cancer treatment, and it brought together everyone who supported me for the purpose of IBC education.  Every year since then, the state offers to renew it automatically. My sister always says yes please, and so the governor signs a new proclamation that is identical to the first and then mails it to me.  Yes, I have a stack of IBC awareness week proclamations.  Doesn't everyone?

For me, October is more than just breast cancer awareness month.  It is about IBC awareness.  It is about my breast cancer journey that began on Oct. 20, 2010.  It is about learning about other breast cancer journeys, both from patients and support people.  No two breast cancer journeys are the same, just as no two patients are the same.  In the spirit of learning about other people's IBC journeys and how they coped with them, here are a few IBC blogs from around web:

Like myself, blogger Lyn was diagnosed with IBC near her 30th birthday.  She opted to reconstruct her breast, but unfortunately she is suffering numerous complications.  Fortunately her cancer continues to be in remission and she is doing well.   http://lynkelley.wordpress.com/2012/10/30/955/  "Life is short and we may get sick and not know where we will be in a year, but you also may be here much longer than you planned for as well"

Another blogger, Jenny, has a great blog about getting rid of her IBC, which she named Gertrude.  http://getoutgertrude.wordpress.com/2008/08/  Unfortunately Jenny succumbed to her cancer a year ago, but her outstanding blog remains as a resource for people interested in breast cancer and specifically IBC.  This is the most depressing aspect of IBC blogs--they often exist with their authors for only a short while.

This blogger is dealing with stage IV IBC and is "preparing for the future of her illness"  http://bluecollarlesbian.blogspot.com/2013_08_01_archive.html  Pretty raw stuff here, and the writing is darn good.

Yea, I'm depressed now, too.  I had good intentions for collecting this list, but clearly this was not my best idea.  All it did was remind me of why I never do Google searches of IBC.  Ugh.

But seriously, the minimum that you need to know are the SIGNS and SYMPTOMS of IBC (copied from www.eraseIBC.org):

IBC symptoms may include one or some of the below:
  • A breast that appears discolored; (red, purple, pink or bruised)

  • A tender, firm and enlarged breast (sometimes overnight)

  • A warm feeling in the breast (or may feel hot/warm to the touch)

  • Persistent Itching of the breast (not relieved with cream or salve)

  • Shooting or stabbing pain

  • Ridged or dimpled skin texture, similar to an orange peel

  • Thickened areas of breast tissue

  • Enlarged lymph nodes under the arm, above/below the collarbone

  • Flattening or retraction of the nipple

  • Swollen or crusted skin on the nipple

  • Change in color of the skin around the nipple (areola)

  • A hardened area in the breast similar to a pencil lead, not a lump
If one or more of these symptoms continue for more than a week, talk to a physician immediately, and find an expert with experience in treating this particular type of breast cancer. Many women have to demand that their physicians "rule out" IBC, and (therefore) become their own best advocate, as more education is needed in the medical community regarding this form of breast cancer.
Be well, everyone!

Monday, September 9, 2013

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.

Friday, August 16, 2013

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.

Wednesday, April 24, 2013

Allergies after cancer treatment

This spring I have had two bouts of an interesting phenotype.  Each bout was the same:  I would awaken one morning with swollen, itchy hands and feet; the itchiness would travel toward but never reach my torso; the itchiness would come and go for several days before finally subsiding.  I assumed that this was an allergic reaction to some undetermined allergen, but since I had no prior allergies I thought I'd do a bit of internet research.

Naturally, Google came up with all sorts of horrible things that could cause swollen, itchy hands and feet.  One of them included various blood cancers, which I know could be a side effect of my chemotherapy.  I therefore called Dr. Oncologist.  She assured me that my recent bloodwork (February    2013) looked fantastic.  She also assured me that this was neither a normal thing nor something that I should tolerate, and she referred me to an allergist.

Dr. Allergist was the most amusing doctor I have ever had.  He had numerous anecdotes and jokes, and I laughed even though I was probably the millionth patient to hear them.  Interestingly, he virtually ignored my swollen appendages.  Instead he focused on the breathing-related answers that I put on the intake questionnaire.   

Breathing issues, you might ask?  Ever since radiation therapy I have had a few breathing-related issues.  For example, I awake every morning with a deep cough.  It ebbs and flows in its severity, so I never thought much about it.  Also, I occasionally have a hard time catching my breath.  Sometimes it  happens during exertion so I chock it up to being out of shape and having permanent lung damage.  But sometimes it happens during rest, such as when reading aloud to the girls.  Also, it is inconsistent.  I often go weeks and weeks being totally fine, then have a spell of hard breathing.  I had discussed all of this with Dr. Oncologist, and she said that she'd order a chest x-ray if it was continuing at my next visit.    

Enter Dr. Allergist.  My breathing issues were unintentionally aired to Dr. Allergist because he had a lengthy questionnaire to be filled out for the first appointment.  Many of the questions pertained to breathing.  Apparently many of my answers to the breathing questions were out of the ordinary, and he focused most of the visit on my breathing issues rather than my itchy appendage issues.

I was tested for reactivity to numerous allergens and we discovered that I am allergic to cats, dogs, mold, and tree pollen.  These discoveries explain everything entirely.  My breathing problems were most severe during the drought last August (mold spores in the air!) and now (springtime is tree pollen time!), and each episode of itchy hands and feet correlate with cuddling my dad's new kittens (I'll miss you, kitties!).

Additionally, I was diagnosed with mild asthma.  This is actually an unfair diagnosis because it is merely the word to define the manifestation of the allergic response.  I have allergies, and they cause an asthma condition.  Presumably if I control the allergies, I will control the asthma.

The result of all of this is that I have two different inhalers and an allergy medicine.  This was a lot to acquire at one time, but I am getting the hang of figuring out how frequently I need to use the stuff.  I hate taking any allergy pill (they all mess with my head in one way or another), but if I take a certain one at night it's not so bad.  And I shouldn't have to take it all the time.  Just in the spring, or whenever my symptoms are bad.

Dr. Allergy did not think that any of these new things are a result of my cancer treatments.  I agree with him that folks can develop allergies at any time in their lives, and that a person's allergies can change at any time in their lives.  But I will note that cancer treatment, including indirect treatments of side-effects via numerous antibiotic therapies, altered my formerly healthy gut bacterial community.  And I will also note that changes in the gut bacterial community influence the immune response in the lungs, and that asthma is one such immune response in the lungs.  My gut microbiota underwent catastrophic changes that are likely still affecting my overall health, including these new allergy and asthma diagnoses.  I am but one patient in an uncontrolled, heavily biased study, so these comments are simply comments and not to be taken as facts.  

On a happy note, Dr. Allergy did sign me up for a chest X-ray, and my lungs look glorious.  No signs of  cancer or anything else unusual.  That gave me a sigh of relief.  No inhaler can cure the chest tightness that comes from the fear of cancer recurrence or metastasis.  That single x-ray film obliterated my fear and gave the inhaler a chance to succeed.  With clean lungs on my mind and a week of asthma treatment under my belt, I can finally take that deep breath that's been eluding me for so long.          

Tuesday, March 19, 2013

Two years since mastectomy

Not sure what the flow of this post is going to be like.  I'm a little bit rusty.  

Every morning I wake up and smile at my loved ones.  I am having a ridiculously good time living (despite these prolonged winter conditions--Mother Nature missed the memo that tomorrow is the first day of Spring!)  It blows my mind to think about where I was two years ago at this time--bald and emptying drainage tubes multiple times daily.  I was revising my pain scale so that I could get more appropriate pain management.  And check out this post from March 2011 that truly exemplifies my optimistic personality.  I was experiencing the worst kinds of pain and having unidentified objects fall out of my body, but I somehow managed to crack jokes and be upbeat.  

When you talk about it in terms of attitude, not much has changed.  I am the same in these most important ways.  I am grateful for that.

Physical recovery has been such a long process.  The fatigue lingered with me for such a long time.  I can retrospectively estimate that it wasn't until January 2012 before I had sufficient vigor to participate in all of my old hobbies.  I often wonder if I continue to gain more energy, or if I have reached my peak.  I'll reflect again in a few more years to determine if the increasing trend is continuous or plateaus at some point.  

This is not nor will ever be a food blog, but today I am going to celebrate my recovery with pictures of a pie.  Not just any pie, but a key lime pie.  My college friends and I would bake this pie in the wee hours of the morning when normal college students were ordering pizza.  I used to make this pie all the time.  I had not made this pie since before cancer.  My evidence for this is that my stash of sweetened condensed milk, purchased and stored exclusively for the purposes of this pie, expired in 2011.  

Last week, I made my key lime pie.

sweetened condensed milk is gradually added to egg yolks.  Then add lime juice, water, and food coloring (if desired, and it's always desired when you live with preschoolers.)
Making this pie caused me to reflect on all of my key lime pie memories:  pie on Iowa Avenue, pie on Bracken Place, pie on Spaight Street.  And now, pie on B_____ St.  

have a special little helper squeeze the lime juice.  makes all the difference.
pour the filling into a crust that you've prepared (I like a graham cracker crust for my key lime pie). Bake until halfway done, then top with meringue.
look at that pie!  and the clever foreshadowing of the green pie pan, suggestive of the filling! I could totally start a food blog!
except that I forgot to take a picture of the sliced pie until it looked like this. I could never start a food blog!
I've decided that I'm glad I don't have a cancer+key lime pie memory.  Cancer was, you know, that stuff that happened to me a couple of years ago.  Unlike cancer, key lime pie has staying power in my life.   Hopefully my cancer is over forever.  Hopefully you can expect a lot more key lime pie posts (figuratively speaking, that is).    

Tuesday, February 5, 2013

Seattle

December was a big month for my family, in more ways than the usual holiday-related stuff.  This is because my husband graduated with his Bachelors of Science degree from a big local University!  I am so proud of him!  After high school he served in the US Marine Corps for four years, then started his degree program, then paused it to stay home with our young children for two years (one of those years being my cancer year), then returned to school in fall 2011.  Isn't he just plain amazing?  I completely agree.  

I thought we should do something major to celebrate his major achievement, so we took a trip to Seattle to visit my brother.  It was a 4-day, 5-night trip, and oh man was it wonderful.  We rented a house while we were there (www.vrbo.com, it's the best!), and Eleanor still calls it our other house and asks when we are going to stay there again.  Below are a few highlights of our trip.

You should know that although we took nearly 300 pictures on the trip, they were mostly of silly faces or the floor.  That is because the kids have discovered their inner photographer and enjoy taking gobs of pictures with our digital camera.  It ended up being a great diversion while waiting on transportation (airplanes, ferries, etc.).  Needless to say Ian and I ended up feeling like we did a good job getting the camera out, but rarely did we capture the true moments of our memories.

airport silly face
airport silly face, with my brother making a cameo in the background.  He wasn't on the same flight as us, but we were flying the same day (he had come back for a visit, and we planned the trip to be travelling to Seattle in parallel with him.)

airport silly face.  Our local airport has these great kiddie tables for us to hunker down and color at. 

airport handsome face
Our rental house was only 3 blocks from the beach, so we walked there despite the rain and chill.  We midwesterners love an ocean beach regardless of the weather!
The rental house had gorgeous landscaping, including a wooden outdoor fish tank with 5 goldfish in it.  We loved to watch the fish, and indeed to count them every time we visited to ensure that none were missing.  It seemed unlikely that their 24/7 open-air tank would go unnoticed by neighborhood kitties, but indeed, the fishies were always accounted for on our watch.  Seattle truly is heaven on earth, at least for outdoor fishies!
The rental house also had an outdoor hot tub.  We got in it every day, and sometimes at night, too (as shown here).
We went to the Seattle Aquarium.  I highly recommend it.  The kids loved it, and although I haven't been to many aquaria for comparisons I thought it was very well done.  
Here's my brother and the girls behind a giant tube of circulating jellyfish.

The aquarium provided so many creative angles for fish-watching!
This is us outside of the aquarium, and it's the only picture of all of us from the whole trip. You can see that Eleanor is ready for a nap after her big morning out!
We decided not to go in the space needle, but what a beautiful day to be photographed WITH the space needle.
We also went to the science museum.  It was amazing!  We could have spent an entire day there but had to leave due to naptime pressure.  There is a large butterfly house, and the butterflies loved Ian.  He had one on his shoulder for a long time.  Can you see it in the picture?  
We spent a day riding ferries and exploring an island.  Ferry time = silly face time!

Now THAT's a silly face.

The last ferry took us back into Seattle after sunset.  It was so beautiful watching the lights of the city get closer and closer.  Impossible to get a good picture with the wind and the rain and the motion of the boat, but a glowing Ferris wheel makes any picture tolerable. 

We also rode the Ferris wheel, hosted a barbecue, hiked to a lighthouse, built sandcastles with our mittens on, got seafood and the most delicious raspberries at the Market, drank fresh-roasted coffee, baked cookies, and walked to a romantic Italian restaurant for a date.  It was such a wonderful trip.  

Thank you so much, brother, for hosting this remarkable vacation for my little family.  You are a wonderful host and operate just at our speed!  Let's do it again soon.  <3 

Congratulations, Ian, on your gigantic achievement.  I am so proud of you for everywhere you've been and I'm so excited for everywhere you're going.  <3