Exhale

Doesn't it look lover-ly?

I tried to pick one letter of the alphabet to help me focus on, but I just couldn't do it.  I'll blame my jumpy mind on the leftover meds from yesterday's bronchoscopy. 

Anyway, the preliminary results are in (and Dr. Henry called at 8 on the dot to share them).  So far, the microbiology stains are negative for cancerous cell growth and infection.  He felt confident enough to use the term "continued remission" and did not sound concerned at all by the fact that these results were just prelims.  Hallelujah and Thank You Very Much.

This begs the question, what IS wrong with me?  I mean, what's causing the shortness of breath, fatigue, lightheadedness, etc.?  He says we will give the samples a few more days to cook, and check back on Tuesday for any signs of infection.  If they remain negative, I will probably have to go on the pukey P for a while to reduce the inflammation.  I promise I won't complain (a lot).  While it destroys my stomach and makes me crabby, I much prefer it to any number of alternatives.  Regardless, Hawaii does have pharmacies and they even accept US currency, or so I'm told.  We can handle it from the sandy beach.  Gee, now that I think of it, I hope AT&T has good coverage on the islands...

In any case, we are now free to hula, mai-tai and pina colada out the wazoo.  Mahalo to all of you for your positive energy, hopes and prayers (and of course, for your Shutterfly votes back in March - can you believe this really happens??).  This has been Scanxiety:  The Extended and Melodramatic Version.  Meet me back here in 3 months and we'll do it all over again. 


Aloha!

xxoo

Laura

When you or someone you love hears the word 'cancer', the air is sucked out of the room. Inside your body a door closes, you can hear it, physically feel it. But Laura took that door and opened it. She refused to be intimidated or bullied or destroyed and she wanted to give others the strength to refuse, as well. Fredrick Nietsche said 'If you gaze into the abyss, the abyss gazes also into you.' Cancer is the abyss. What did it see when it gazed into Laura Ziskin? It must have been terrified. Scared shitless, really, by her bravery, courage, utter determination to never blink, never run. Now we have to do the same in her honor. Open the door, look at cancer for the thief it is, and refuse to let it steal any other life, any love. In her name it's the least we can do.
Tribute by Janet Champ (on the SU2C website)

Petri Dish

Tonight, my fate lies in a small, round, plastic plate of goo.  I had my bronchoscopy this morning, of course, not without some drama for good measure.

I was/have been for the past week beyond anxious.  Finally, this morning had arrived and it was showtime.  My mom and I were on the road by 6:30 am (me, unmedicated, in anticipation of the sedation to come).  Unfortunately, that sedation couldn't come quickly enough.  

I registered at admissions and went up to the familiar waiting room of the radiology department because, you guessed it, this procedure is done through IR (interventional radiology), just like almost every other diagnostic procedure I've had done in the past year.  

In a preventative attempt to keep calm, I had created a playlist on my phone last night to get me through the initial moments while I waited for an IV to be placed in my arm and for all of the consent forms to be presented for signature.  Sadly, the playlist wasn't quite cutting it when the first nurse to try the IV blew my vein.  Nice.  The second nurse (who had been known to stab me unsuccessfully in the chest during port access in the past) managed to get a line in closer to my wrist after all of the spilled blood was cleaned up.

Then, obviously, there was the humiliating pregnancy test (standard procedure even if the only possible way I could be with child at this point would be via immaculate conception).  Thank goodness I failed.  But I did succeed in providing a urine sample without spilling any pee on myself, my ridiculously unsnappable gown or the toilet seat (still wet with the morning's blue disinfectant).  Aaah.  The little joys in the life of a perpetual patient.

Just one more thing before the procedure could begin:  2 very painful shots in my right arm (all venipuncture must be done on the right arm due to the clot I had on my left side last summer).  SOB those things hurt.  Shoulder is still sore now.  This seems quite out of order, but the first one was a drug to dry up secretions (so there's no saliva in the way while they're putting a scope down your throat) and the second one was a pain killer.  Couldn't they have reversed the order?  A little compassion, people?  Would it kill you to use some freezing spray??  Jeez.

So, there I am with tears streaming down my cheeks, off and on for the next few minutes.  Instead of being upbeat and distracting (as other nurses have been known to do), they went about their business, only one stopping to pass me some cardboard tissues, apologizing that she had to see me back so soon.  Awesome.

Eventually, I made it into the OR and before I knew it, I awoke in time to get a chest xray (to be sure my lung hadn't collapsed during the scope) and to be wheeled  back into the IR prep/recovery room.

After a few hours, they agreed to give me water (something about my gag reflex not being able to work properly since my nose and throat were numbed for the scope, blah blah blah).  And delicious zesta crackers - 2 whole 2 packs.  I was ready to go.

Still quite woozy, we made our way back home, stopping at both yogorino as well as a water ice place to get "lunch".  

And now, I'm ready for bed.  Just a small step up from the emotional torture I was feeling a few hours ago, ready for the rest of my sleeping aid to help the time pass faster.  Because there is nothing I can do to make this outcome any different.  I can hope it's a good one, But I'm just waiting on those stinkin cells in the petri dish in the pathology lab of Pennsylvania Hospital.  C'mon, dudes.  Behave.

xxoo

Good, Bad, Ugly

smirky?  it is supposed to be a smile ~

The good news is Judah is wonderful.  He is happy and healthy (fingers crossed) and just simply the best.

The bad news is that Dr. Henry does not know what to make of my scan.  He took it to his radiologist and pulmonologist and while they have different theories (fungal infection? lymphoma in the lung?), they both agree that they need to get a closer look.  This means I am going in for a bronchoscopy.  It is still not scheduled, but I am hoping it will be done in the next 3 minutes.

No, really, this brings me to the ugly.  The waiting.  The waiting is absolute torture.  I have been thinking about this since 6:30 pm on Friday - anticipating the absolute worst news:  it's back. And, there won't be any news until we get the bronchoscopy done.  AND, I can't even get it scheduled until the pulmonary guy gets into the office at 1 pm and hopefully calls me straight away.

Of course, this is all happening exactly 1 year after the initial diagnosis hit.  Remembering back to the waiting period last year, I remember just trying not to vomit, pretty much 24/7.  But I was just dazed.  I had no idea what was in store.  Sadly, now I know.  Not only do I know, but I am thoroughly nauseated by the thought of starting all over again.  I have hair, for Pete's sake. We were just starting to pull ourselves out of the hole. 

I have NO desire to have another summer like last year.  I mean, I will do what needs to be done, but I won't like it.  Remember when I was looking for the fast forward button?  I realize I stopped asking about it, but if there's anyone who has located it, we would all really like to get on with our trip to Hawaii, thank you very much.  Speaking of which, to pack or not to pack?  Do I prepare myself for the possibility that we will not be able to go?  Or do I keep my chin up, expecting to proceed as planned (BWAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHA.)?

DISTRACTIONS

We kept busy this weekend, venturing on 2 day trips, to the beach and then to Lancaster, to see Thomas the Tank Engine (of PBS and literary fame).  It definitely helps to be distracted, but at a certain point, the task is virtually impossible.  So after a trip to the craft store to get projects (to keep Judah busy, at the very least), I am now an hour away from potentially hearing from the next doctor.






***Status Update***
Since composing the above portion of this post, much communication has transpired (along with some pharmaceutical assistance).  I am now scheduled for a bronchoscopy to take place Wednesday morning (first thing) and we will hopefully get back preliminary results by Thursday afternoon.  Dr. H (rads onc) left me a message that he continues to believe that the spot in my lower left lobe is still lung inflammation.  While that's reassuring, I'm not convinced.  The anxiety level is way through the roof, although having a few of the details nailed down does help a teensy bit.

I'm off to snuggle up with my new Whole Living mag and maybe a few chapters of Bossypants (I'm trying to make it last) on the iPad.  May the next 72 (or so) hours pass super duper flash lightning fast.

xxoo

yes, oatmeal.  with my special green powder, almond milk, peaches and blueberries mixed in:  Oatmeal.  how can someone who eats this for breakfast have cancer??

The Waiting Game, Part Deux

the view across the building of the chemo unit. blech.

Two posts in two days?!? 

I am trying to distract myself while waiting on a return call from Dr. Henry.  Knowing I shouldn't be holding my breath (not that I could if I wanted to), I would really like to hear something good.  While waiting for results, the mind (my mind) tends to create potential scenarios to prepare for any number of words to be heard over the phone.  Here are some of them:

Option #1:  We've looked over the scan and found you are no longer in remission.  Pls report to the hospital immediately so we can begin your stem cell transplant.

Option #2:  Upon looking at the scan, and hearing about your persistent symptoms, we believe it's in your best interest to begin a loooooooong regimen of prednisone (aka pukey p) to relieve the inflammation in your lungs.  This will be at least 5 months.  You will gain 50 pounds and become a royal P.I.T.A. (or, as they say, irritable).

Option #3:  We think the lymphoma is okay (without a PET, we can't say for certain), but we believe you are now suffering from Orthostatic Intolerance/Tachycardia.   You may continue to feel tired, lightheaded, poopy and just "off" indefinitely.

Option #4:  No call (current state).  Continued waiting and worrying, creating my own diagnoses via Google search box in upper righthand corner of my screen.

I am sick of possible scenarios.
I am sick of waiting, of bad news, of disappointment.
I am sick of feeling sick, of fatigue, of being a patient.
I am sick of cancer, of people dying, of grief, of people worrying, of uncertainty, of living in fear, of not being able to enjoy the moment.


My positive spin comes in the form of giggles, songs and squeals. 

xxoo

ps. If anyone reading this is able to get Dr. Henry to call back any faster, your pull would be much appreciated right now.

Reigning Supreme

I hereby crown myself Queen of All Ridiculous Side Effects and Neverending Post-Treatment Ridiculousness.

After Sunday's trip to the ER, where I was told I have pneumonia, I was prescribed Augmentin, to supposedly treat said pneumonia.  And I would say, about 24 hours after starting the pills, I felt improvement in my breathing.  However.  I took the ct scan disk with me to see Dr. Henry (for my 3 month check up) and he takes a look and disagrees with the pneumonia diagnosis.  For now, I am on the antibiotic until tomorrow morning, by when he will have had his radiologist look at the scan and give his take on it.

Well, that was the plan anyway, until I started to have an allergic reaction to the augmentin (continued rash, bad headache, weird itching...).  Good times.  No augmentin for me tonight.

Newest development in the post-treatment effects saga:  I have now been diagnosed with LPR (reflux without the hearburn - the acid travels back up into your throat instead! whoopee) and will be back on my acid reducer as of tomorrow morn.  Can't wait to see what side effects those bring.  In order to give me this diagnosis, my new ENT had to put a little scope up my nose and into my throat.  Prior to that, he gave me some novocain to numb my nasal cavity.  Imagine my "are you serious" look with a v long q-tip stickin out my nostril.  It's just too pathetic a picture to post on here (but I did send it to Dan).

I so miss the days of trusting doctors and medicine to make me feel better.  Hell, I miss the days of feeling better altogether.  I have to believe it will all get better.  I'd be really great, though, if it could get better faster.  Cause Lord knows I'm running out of patience.  Tomorrow is D-Day (also known as Diagnosis Day).  1 year since Dr. Henry called me (around 9:30 pm) to tell me the 3rd pathology lab had finally given a definitive diagnosis on my biopsy sample:  Primary Mediastinal Large B Cell Non-Hodgkins Lymphoma.  (Well, all he actually told me was the NON-Hodgkins part, so I knew what kind of chemo I'd be receiving the next day).

Hallelujah - one year later and I'm still here...

I am hoping that tomorrow will bring some better answers and a clearer head.

xxoo

ps. we love photobooth.

Loss

no port? no problemo.

I've been struggling all day to choose the words that don't sound too over the top or hyper-dramatic to describe what the past few days have been like.  I haven't quite found the right ones, but I decided to just sit down and write anyway.

I know I wrote about some odd symptoms I was having a few weeks ago, and over the past week, they definitely worsened.  I quickly stopped taking all of the new meds I was put on (by 2 separate doctors), but the symptoms did not stop (as I thought they would).  So, last night, mommy and I went over to the ER to get to the bottom of this worsened fatigue, shortness of breath, lightheadedness and a new dull pain in my shoulder.

Of course, I was certain these are signs of the cancer having returned, after only 3 short months of remission, and the only way to know for sure is to do a pet scan.  Unfortunately, I had one of those 3 short months ago and so I can't have another one for another 3 months.  I can have a ct, though, so after meeting the on-duty nurses, physician assistants and doctors (which = tell your story until you're blue in the face), I eventually make it to the scan room.  I am scanned (not because they think C is back) because they think I may have another blood clot (had one last year in June after round one of chemo).

pocket has a secret opening for a port.

Luckily, the report showed a few good things:  marked decrease in size of mass (of scar tissue), no fluid (or pleural effusion) in the lungs, all else is clear.  On the down side, they did see a small "infiltrate" in the left lower lobe, which was diagnosed as pneumonia.

I just love pneumonia.

I will say, I dig the speed and efficiency with which the ER gets things done (at Abington, at least).  I was in and out in 4 hours with bloods, ct, results and a filled prescription all completed.  Now, 24 hours later, I will say that the shortness of breath has definitely improved, the fatigue and lightheadedness, not as much.  As my mom says, we're still climbing out of the hole.



***

Separately, we lost Auntie Laura last night.  Laura Ziskin, the mother of my dear sister-in-law, died from metastatic breast cancer.  My brother, sister-in-law and Laura's husband, Uncle Alvin, were all with her at home.  I imagine she was quite pissed.  As, of course, am I.

I had always admired Laura's work (from my brother's point of view) until I met her at the SU2C telethon in 2008.  Prior to that, I knew she had become part of my brother's left coast family and I had always enjoyed looking for her name in the credits of whatever movie I was watching (chances were she was involved somehow, if not in charge of the whole kit and kaboodle).  My parents and I flew out to LA to watch the show live in the Kodak Theatre, our eyes filled with tears right from the start.  Even though cancer had taken family members from me, I was still just "touched by" and not yet "in the fight" myself.  My feelings about the big C weren't those of outrage and anger, but just sadness and sorrow.

Then we went back for the beautiful wedding the following Spring (two years ago - almost to the date).  And we became "family".  When I began my diagnosis and treatment adventures last year, Laura was right there - a phone call away - to talk to me about what I should wear or eat (or swallow the night before) that might make it all a bit easier to handle.  Remember the wigs?  They came from her in a perfectly-timed care package just after my hair had taken hiatus and I was way down in the dumps.

in the chair, in the fight.

My admiration for her became less for the movies she made (although I had seen Pretty Woman at least 50 times before my brother even met his future wife) and more for the gumption she had to stand up for herself and the rest of us.  Her vision and her will to defy odds.  She was truly and deeply inspiring last September, as I watched the second telethon from the happy chair after round 5 kept me local.  She was interviewed wig-less during the pre-show (beautifully produced, I might add) which moved me - as a still-bald, in-the-fight, feeling-crappy, cancer goddess.  I remember her describing herself as a "pissed off patient" and I felt so connected at that moment, just less angry and more feeling defeated.  I wanted someone to rile every body up, cuz quite frankly, you SHOULD be pissed off.  This is getting ridiculous and we shouldn't have to take it.

That admiration has not changed one bit.  I will always adore that spirit, the feisty nature that helped her become a success on many levels.  I wish I could say I was mad as hell, but I'm not quite there yet.  I feel sad for the rest of us that she's gone.  I feel robbed for my sweet sister who had to say goodbye way too soon.  And of course it rears the fear that if this can happen to LZ, it can happen to anyone.

In trying to bring myself some comfort minus the calories, I've been reading all of the lovely words other people have written for and about Laura today.  My two favorites:

"Laura always said 'I hate to wait' (she hated to wait!) and as this sad sad day closes, the thought I have to share is - don't.  Don't wait to help someone you can help, or to love someone as you would if you have to say goodbye, don't wait to make a small change in your life, or a great one.  Live in the way you will want to be remembered, and love as much as you can." - Bedonna Smith (friend and colleague)

"Her work trying to help others with cancer was the sort of heroism that makes Peter Parker look like a wuss." - Matt Singer of IFC News

xxoo

Sensitive

1 in 100,000.  That's me.  Well, at least as far as getting "rare" side effects from medications.  I was put on a few new ones last week due to the heart rate and some other issues and since then, have been extra fatigued, not breathing well, pulse pounding, etc.  Since I started 4 new meds in 2 days, it was hard to decipher which one(s) was causing the reactions.  Finally, after doing my research (and discovering that only 1 in 100,000 people see darkened urine while taking this drug), noticing an allergy rash, and speaking to my multitude of doctors, I am now off of 3/4 of them.  The plan is to return to one of them after this rash clears up. 

It's so frustrating to feel like I have zero control over any given situation.  I said to Dan the other day that I wish I could go back to this naive place I was in before where I trusted doctors and believed they could heal whatever ailed me.  Ignorance is bliss and I was the happiest of them all.

So I spent yesterday letting my heart chill out on the sofa in the heavenly air conditioning, all so I would have the energy to go to the Glee Live concert, as I had been looking forward to it for many months.  I simply refused to have this occasion derailed by my hyper-sensitive insides, even if it meant I had to drink water constantly to keep from coughing.

And the show was amazing - every single song was a show stopper - and sent me right back to high school (could it have been all of the teens and tweens in attendance?).  I couldn't help but think that if Glee had been around when we were younger that we could've been cool in high school (slushies excluded).  Amazing what pop culture is capable of.

Today is another hot one.  Only Judah's 2nd day of summer vacation and I'm already stumped at how to entertain him without over-exerting myself.

Honored

After all of the terrible mosquito bites I've endured in my life, I never thought I'd see the day when I was grateful to see a bug bite on my foot.  But the reality is that if I'm itchy, I become panicky.  If I look to the itchy spot and see nothing, the panicking continues.  If I see there is something to be itchy about, I can relax.  Thus, when I see an actual mosquito bite, I sigh with relief that there is a reason (other than cancer shmancer) to scratch my foot.

And the next scan is now 2 weeks away.  So I'm gearing up for the news, on the lookout for possible signs of a recurrence.  The continued breathing issues as well as the tachycardia don't help matters much, but we're dealing the best we can.  This includes many many cups of tea and a MOST delicious raspberry-rhubarb pie from Food For All Market in Germantown.  I cannot keep my spoon out of it.

A visit to my school on Friday also helped take my mind off of the impending scan.  I was invited a few weeks ago to come for a surprise.  Apparently the kids had planned something (or this is what I was told) and all I knew was where and when to show up.



What I quickly discovered was a plan that was orchestrated by two very caring and wonderful parents to honor me!  They prepared some appreciative words (even though I've been out of the classroom all year) and had many of my kids read aloud excerpts from this very blog.  Of course there were many tears (both mine and the kids'), but also laughter and smiles.  After all of the beautiful sentiments were expressed, I was presented with an amazing quilt - the squares decorated by many of the kids, parents, and staff members of my school - assembled by a super-crafty mom.  Of course, they made sure the colors were all purple, green and pink (another fave) and there were sparkles and words of encouragement everywhere. 

I was truly speechless (and that's saying something).  Even now, I'm finding it challenging to articulate how it made me feel to be honored this way.  I just felt so loved and lucky to have such thoughtful and determined people in my life. 

This year has been such a roller coaster of emotions.  One feeling that would come and go has been guilt.  I feel guilty that I couldn't spend a second year with my students (especially since I LOVE 4th grade) and that their parents spent the year thinking I would eventually return, but I didn't.  I felt guilty that I couldn't do my job, or rather, that my job description had drastically changed.  Now, instead of leading discussions every day about major themes in literature or exploring different methods of problem solving, I became a juggler of doctor appointments and alternative healing methods.  I went from being a full time working mother to being a sick person. 

Aside from feeling loved and lucky, I felt reassured by these wonderful parents.  It was okay to be taking care of myself (even though I'm way more familiar with taking care of others).  They were just happy that I had kept in contact with their children.  Quite frankly, I couldn't have imagined it any other way.  They are MY kids, too. 

xxoo

You're a Mean One

My Little Lion

I think we've got too much laughter.  I've always believed that too much happiness tempts fate.  It's like waiting your turn in line for a terrifying ride.  Only no one can predict how long the wait is or if the ride will be working once you get to the front.

Tonight as we finished up dinner, Judah was hosting his evening comedy routine on the microphone.  He brings the mike around to Dan and I while we're sitting at the table and asks us to introduce ourselves to the "audience".  Dan was silly, cracking the kid up.  He was so happy and we were all giggling and enjoying the moment.

And then (and then, and gentlemen and then...*name that Broadway show).  And then the Evil Mr. Grinch comes a-sneaking into my consciousness, refusing to allow me the pleasure of pure happiness.  He snivels at me, reminding me that too much pleasure, too much happiness is dangerous.  "Ah, ah, ah," he warns, "watch how wide you smile there, Lady, for you will smile your way into a deep pile of doo doo."

That really pisses me off.  I know I made a point a few years ago to eliminate the word should from my spoken vocabulary, but now it's rather impossible to cease using it altogether considering my altered circumstances.  I should be able to enjoy a lovely moment with my family without a green goblin entering the scene and destroying my time.  I should be able to watch my child laugh freely without a care in the world and not think about whether or not he's tempting fate, too.  I should not constantly be thinking 10 steps down the road of doom when I can't even plan for the month of July.

***

Tomorrow I will be wearing a Holter monitor for 24 hours to get a better picture of how my tachycardia is behaving beyond the 4 seconds that the EKG machine records.  I went to see a cardiologist last Friday, who diagnosed me with "sinus tachycardia", which basically means that there's no irregularity (that they've detected) in the rhythm of my heart, but the rate at which it beats is just elevated.  This condition is always secondary to some other problem in the body; it's the heart's way of responding to another problem (like, say, inflamed tissue...).  My poor heart thinks it has to work harder.

One solution (until the pneumonitis heals) may be to take a beta blocker to slow down my ticker.  However, one complication is that this type of drug also lowers your blood pressure.  I already have low blood pressure.  We don't want to go too much lower.  We will see what the Holter tells us (if anything new) and then make a decision.  The past few weeks have been filled with doctor appointments and heat and humidity.  I know my breathing is suffering because I physically cannot breathe in this soupy air (today's heat index was 96 degrees - ew).  Apparently now I am considered in the "sensitive group" when it comes to air quality.

This is the first time I've prayed for a thunderstorm to come and give us a break from the heat.

xxoo