Anxiety: It Ain't Just a Triple Letter Scrabble Word

There comes a certain time in every cancer-afflicted person's life when they find themselves at the mercy of modern technology. Specifically speaking, the full body scanner. Luckily, once cancer has been detected in one's person, the scan no longer involves a whole body, but is limited to the region in question. In my case, of course, it is a localized chest scan (sometimes CT, which looks for abnormal masses and takes interesting pictures of your blobby insides, and sometimes the PET, which looks for hyper metabolic activity in places other than major organs - a.k.a. bad cancerous dudes trying to thrive at my expense).

Since the end of my radiation treatment in December, I have had 2 scan experiences. The first was at the end of January, and of course, laden with d-r-a-m-a, what with my tachycardia and shortness of breath during the port access (which was a big fail). The chest CT I had (with contrast - that is injected via IV and makes you feel all sorts of warm and fuzzy inside) turned out to have "favorable" results. It's that one lonely word I'm clinging to at the moment.

The second scan I had was last week's MRI (also with contrast, this time made me feel like I was about to hurl all over the inside of that very small tunnel) of the thoracic spine. My radiation oncologist was looking for anything that might have been putting pressure on my spine, causing my nerves to go haywire (remember that whole sunburned skin minus the redness?). Luckily, we got the all clear from him on my spine. Thank you, Dr. H.

We have finally arrived at the first post-treatment PET. This Scan is the one I've been both dreading as-though-the-world-is-coming-to-an-end-tomorrow, and willing to-hurry-up-and-get-here-already. If I could fast forward through tomorrow until the results are in a nicely typed and printed radiologist's report, we would all be safer and happier (no matter what the outcome).

The worry, the fear, the vomitous lump in my throat that persists every time my thoughts travel back to what tomorrow's scan could bring, are seemingly insurmountable.

Take a trip with me, if you will, down Memory Lane. Almost a year ago, Dan and I were dealing with a miscarriage, me having breathing issues, the start of The Itching, and so forth. Not a great time in our lives. The end of May rolls around and the chest x-ray shows "a mass". This leads to the first CT and then the first PET, the appointments at an ONCOLOGIST'S office, for crying out loud, the bummer of an IR biopsy, the ICU recovery of the surgical biopsy (ugh, catheters suck), and the waiting for results. 6 insufferable rounds of chemotherapy, one neutropenic hospital stay (and the entire practice season of the CHS marching band), and 4 weeks of radiation later, I do not feel any closer to the end of cancer. If anything, I fear the worst, that all of those fevers, the hair loss, overwhelming physical fatigue, insomnia, crying (still), inability to give my child a bath before bed, it was all for nothing.

I must continue to fight, to deflect those dastardly evil cells whose purpose is to destroy all of my good ones.

There are many others (too many) who have been down this road, who have moved onto SCT (stem cell transplants) with great success. I try to remind myself that that option is there for me, that even if tomorrow's scan is not dark and boring as we are all hoping for, that this is not the end of the line, we have not yet exhausted all of the available treatment options.

This doesn't come as much comfort though. The idea of more aggressive chemo, losing my hair all over again, inflicting even more pain and suffering on those around me, somehow is not all that appealing. Surviving? Yes. Living to see my child grow into a young man? Very much so. And I will do whatever needs to be done to make that happen.

But having this opportunity to look into the rearview mirror and revisit the trauma of the past 9 months? The only ones who benefit are Puffs and Kleenex. They are SO reaping the profits here.

I realize I did not quite articulate the experience of "scanxiety" the way I had initially envisioned. I hope you get the idea without the actual experience: it's terrifying, in a personal house of horrors sort of way. Instead of ghouls and witches popping up around every corner, it's horrible visions of funerals and sadness, empty holes and lives being led without you.

Bright and early tomorrow morning, my port will be accessed for the bajillionth time. I will post again as soon as I'm ready to share the results publicly.

xxoo

Puttin the Fun in Function

Yesterday I reported to Abington Memorial Hospital for my scheduled Pulmonary Function Test. After an unusually uneventful registration process (with a woman who recognized me from last week's thoracic spine MRI), I was sent to the Pulmonary Lab (who knew such a thing existed?) upstairs.

I was taken to a small room with a little chamber inside. I sat in the chair and did some breathing exercises into a mouthpiece that was connected to different tubes which had computer sensors on them. These were hooked up to a computer which read amounts of oxygen and CO2 coming in and out of my lungs. The Respiratory Therapist (who wouldn't let me take any pictures of the breathing booth) gave me a bunch of different breathing exercises to complete (with a nose pincher ensuring I wouldn't be able to cheat). I had to breathe slowly, quickly, pant, blow like I was playing the trombone, hold my breath... You get the idea. These exercises continued for about 40 minutes with me attempting to follow directions through multiple coughing fits and almost passing out in said chamber.

Staring at a poster comparing a smoker's lung to a healthy lung did not help matters much.

I asked if I failed at the end and she laughed at me. No, ha ha. You will have your results in 5-7 business days.

SO annoying.

Next up: the big, bad, PET scan.
When? Monday, 3/14 8 am for port access

Where? Pennsylvania Hospital, baybee

Why? to check the levels of metabolic activity in my mediastinum. High levels imply one of two things: cancer is still active OR there is residual inflammation from the radiation. Whoop dee doo.

How? I prepare for this scan by eating low carb, low sugar, high protein the day before as well as avoiding strenuous (read: any) exercise or heavy lifting for a few days before (no stress-reducing yoga -- booooo).

Remember, they inject me (via the port) with this radioactive glucose. I sit quietly in a little room (thank goodness for my ipad) for 30 minutes while the glucose travels throughout my whole body. The tech comes to retrieve me and takes me into the scan room. I lay on the table, put my arms above my head and then get zoomed in and out of the donut. 10 minutes later, I'm back in the IR department (my good friends at interventional radiology) and they are de-accessing my port while I'm enjoying a scrumptious turkey sandwich and some graham crackers.

My whole body tightens at the thought of this endeavor. I may require the use of chemical supplements so that a panic attack (as this scanxiety thing is a very quite intense real thing) does not prohibit my being scanned.

Part Deux: I've been thinking about where I'd like to be to receive the results of the test. Do I want to be around people who love me and want to know the results almost as badly as I do? Or is it better to digest the news privately, with just Dan hearing them delivered via speakerphone? I know I don't want to be driving or with Judah (or worse, driving Judah), lest I lose control of the car and veer into a ditch. Hopefully I will establish a plan to receive the results, good or bad, by Tuesday, at which point they could become available to me at any time. My stomach hurts just thinking about it.

I'm trying to gather my thoughts (ha ha ha har dee har har) about scanxiety to adequately describe the sheer insanity that takes over one's brain when the mind wanders to (hopefully distant) sad lands. It ain't good. Stay tuned for a fully detailed description.


xxoo

Word of the Day

Pneumonitis. For seriousness, Mia? What now?

Inflammation of the lung. In my case, as a reaction to radiation. I finally spoke to my oncologist (who is currently on probation - I'm not so quick to forgive), who concurred with my radiation oncologist that my shortness of breath is due to my lung getting all pissy about being zapped. Can you blame it, really? I mean it's just been minding it's own business, processing oxygen, fending of the no-good doers of the mediastinum when all of a sudden it gets blasted with death lasers. Poor tissue.

So I feel less anxious that it's related to the cancer, but of course, my most harmful symptoms have all been a side effect or result of treatment. So I shouldn't really be surprised.

I went in to visit my kids at school yesterday and they were excited to see me (as I was to see them). It always lifts my spirits and makes me feel like myself again when I'm with them. The fact that I get treated like a movie star probably has nothing to do with it.

They all want to know when I'm coming back. I told them, as soon as I can breathe normally again, I'm here. And I do want to be there, with them, and with my fellow teachers. What I don't want is the paperwork, the grading spreadsheets, the benchmarks, PSSA's, the directives sent from waaaay high up that we MUST follow, lest someone find out we are using our own brains to think, speak and make choices on our own. I'd love to be back in the classroom, teaching. Watching kids make discoveries and connections. Helping them to do their best, academically and socially. Setting goals and expectations individually, then sitting back and watching them blow those goals out of the water.

I know in my heart that we will never get anywhere with our children if we spend more time testing and grading what they can do (I haven't even gotten to how awful this is for a teacher yet!) than time to experiment, investigate, explore, discuss, analyze, reflect and write. It makes me long for my own private school days. Oh, Oak Lane Day School, I will never forget you. I didn't become a math whiz there, but I did develop a love for school. In fact, everything I know about art history today, I learned in the little slideshow room off of the ceramics area. We helped out the "little kids", dissected sheep's eyeballs (sorry vegetarians), spoke in Russian, even traveled to DC and stayed in a youth hostel for 4 days. I honestly didn't learn how to subtract large numbers in my head until graduate school (and for that, I'll be paying a monthly fee until 2027, no joke).

Don't get me wrong, I'm not saying subtracting isn't an important skill that all of us should master (preferably prior to higher education). What I'm saying is, we need to make time for life experiences and personal relationships in school, especially if we want to instill a love for learning in our children. This is supposed to be FUN, people!! Lord, if you don't like what you're doing and where you spend 8 hours of your awake time 5 days a week, something's gotta give.

Forgive me my tangent. I didn't have an answer for my kids as to when I'd be back. I'm hoping this lung business clears up in the next month so I can regain some sense of normalcy, but I can't go back (especially to a stressful and - I'll go there - germ infested atmosphere) until I'm truly ready, physically and mentally.

What I did have for them was a book of poems that I may have borrowed from my child (given to him as a baby), Once I Ate a Pie, by Patricia MacLachlan and her daughter, Emily MacLachlan Charest. I reviewed what it means to be written from the point of view of someone other than the writer's (say, for example, from a dog's perspective), then asked them to listen to the poems with the job of figuring out from whose POV each was written. They quickly caught on, and all enjoyed the adorable puppies depicted next to each poem. It was just like old times, at least from my point of view.


UPDATE: Since the initial composition of this letter, the pneumonitis has continued. Dr. Henry is sending me for some pulmonary function tests to see just what is what in my chest. I harbor many, many fears about potential results, but I'm trying to distract myself for the duration (OH BUT FOR THE WAITING...) with craft projects. See photo below of a sampling of pillowcases I made for ConKerr Cancer. Bringing them back to the fabric store this afternoon to be delivered to children undergoing extensive stays in area hospital, only to pick out more fabric (and Judah now wants one, too). Thanks for the sewing machine, Mommy!













xxoo

Facebook, Shmacebook

I've been asked recently what gives on my current facebook hiatus. Let me begin my answer by saying this. Facebook has many excellent qualities: reconnects people who have lost touch (Hi, Gina!), keeps you in the loop with your friends' lives, enables fast and easy picture sharing, and has the ability to help create communities (for example, Patients Against Lymphoma and the NHL primary mediastinal large B cell groups I'm a part of). These connections can be extremely valuable, especially in times of trouble. CAN be helpful, CAN make you feel cared for and loved during times when you might otherwise feel all alone.

In January 2010, my new year's resolution was to get off of facebook. I was struggling with fertility issues and it seemed like every time I went onto my account, someone was announcing a pregnancy or posting (very early) ultrasound pictures or complaining about being tired due to pregnancy exhaustion, etc.. You get the picture. Well, quite frankly, I kept hiding these people from my newsfeed so I didn't have to read all about their exciting events. And even more frankly, many of these people weren't even (real life) friends of mine. Once you have more than 300 facebook friends, you can be sure that 75% of them are not people you have regular contact with or have seen in the past 10 years.


** I have tried multiple times to post a link to two articles discussing this Facebook phenomenon to no avail. Check back to see if I can get it to work before 2012.**

Psychology Today

Time

Back to the new years resolution. I was doing a pretty good job about a year ago, if I do say so myself. I was not comparing myself to other people (as much) and I definitely did not feel as sad. Fast forward to the end of May 2010, Dx time, and here I go, right back to the FB page I so loathed. I needed to rally the troops and feel like I was being hoisted onto the shoulders of my friends (or 25% of them, anyway). And I did. There were days during chemo when I did not have the energy or desire to talk on the phone or take visitors. But one click, and there I was, hanging out with all of my besties in my living room (who am I kidding? I was in bed). Let me not ignore the many, many people who expressed heartfelt concern on a regular basis (via FB) and who checked in on me, wrote me mostly meaningful messages and encouraged me all throughout the baaad second half of 2010. Like I wrote before, FB isn't all bad.

Okay, no need to relive that nightmare on such a glorious almost-spring morning (today, in fact - March 2 - is the 20th - yes, that's twentieth - anniversary of me becoming a bat mitzvah). Anyway, that bed-ridden, bald time in my life is in the past (let's hope for good). Now, by the grace of the well-behaved cells still roaming my innards, I am NOT bed ridden and all alone. I have some of my energy and immune system at my service (knock wood or spit it out if you are so inclined) and so I am not quite as in NEED of the social network anymore.

I can foresee a time in the not so distant future when I will be able to just check out my friends on FB every now and then (and even wish people proper happy birthdays), but now is not that time. Re-equipped with my trusty bluetooth keyboard, I can be found here on my blogspot.

xxoo

Back in Business

I am pleased to announce that I once again have use of my wireless keyboard. The first one had to be returned to (insert unnamed internet giant retailer here) for reasons I believed to be due to a manufacturing defect (certain keys would not appear when typing in caps lock). Now that I'm typing on the newest keyboard (purchased at neighborhood Apple store), I am realizing the problem is that there's a conflict between the iPad shortcuts and using the keyboard. Perhaps on the next update those Apple people will fix this.

In any case, I know I've been slightly M.I.A. (had to use shift) for the past few weeks, what with my disappearance from facebook and my absence from the blog. Never fear, I am back.

My upcoming PET scan is scheduled and the upgraded anxiety has commenced. Knowing I am hypersensitive to every ache and pain in my body is somehow not reassuring. I have some unpublished blog posts, which I will proof and post in the next few days, but I just wanted to get a quick message up here to let my loyal friends and family know I haven't gone completely underground.

Now. If you'll excuse me, I'm off to be crafty for 10 minutes before I go to pick up J from school.

xxoo

ps. I'm sending very joyous, albeit belated, birthday wishes to a few very special people whose email addresses I could not locate in a timely manner. (I could not break my FB fast. I'm sorry.)

GO AWAY

Could I just go into one room and NOT see the word cancer? Turn on the TV and not hear a news story about some phony cancer doc? Not think about it for more than 4 and 1/2 minutes? I am SO over it. I am over the troubled breathing. I am over crying about my worst fears and looking at myself in the mirror only to be repeatedly reminded (and shocked) about my situation. I'm really ready to be done with the stupid dummy pig brain C.

CANCER, NOW HEAR THIS: LEAVE ME ALONE. YOU'VE HAD YOUR TIME IN MY LIFE, NOW BE GONE WITH YOU.

Do you think those mutant cells are listening? I certainly hope so. I still have 5 weeks to go before the PET scan will tell us precisely how effective my treatment was. I am dreading this scan for a good number of reasons.

Numero Uno (aka Captain Obvious) - I don't want a lotta bad news.
Numero Dos - I don't want a little bit o bad news (or, be told I must repeat the scan 6 weeks later to be sure a different treatment is required).
Numero Tres - While I would love a miracle to descend upon our family, I dread returning to having the fertility struggle on the forefront. The stress, sadness, the addictive hoping, the frustration and the disappointment; the elements of each month.

Not to say that I haven't been in a very regular state of frustration throughout the past nine months (hmmmm... is that just a coincidence?), but I've had bigger fish to fry.

Looking over these reasons to dread the PET, I realize I'm up a creek. I can't win with a clean scan and I most definitely can't win with a dirty one.

Tonight's temporary solution involves watching The Best Thing I Ever Ate (both "at a deli" and "salty goodness") and working up an appetite. What's so wrong about drooling over a fresh corned beef special?

xxoo

Buzz Buzz

We have been quite the busy bees this weekend. Since Friday night, we've been bopping around, celebrating good news from Philadelphia to New Jersey and back again. Last night was the first night in a while that we had a babysitter (not my parents) over to watch Judah while we went OUT. This sitter was not a new one, but she hadn't been here in close to 9 months, so Judah was a little anxious (to say the least). After finishing his dinner (with a little added "tear salt"), he decided that in order to avoid the sitter altogether, he would rather me put him to bed an hour early. So, fine. He was extra cooperative and no tears were shed when I said goodnight. He was up "at sparrow's fart" this morning, but stayed in bed until seven oh oh, as usual. Dan marvels at just how clever he is, and also stubborn, to willingly give up chocolate and playtime in favor of a bedtime with mommy. Oh, my little mama's boy.

We, the adults, also had a successful evening (although with not quite as much slumber as J-man), out to dinner with fabulous friends. Gooooood food! Goooooood friends! I did drink a glass of wine. Aas in ONE. Then woke up this morning with a pounding headache. It seems as though I'm not meant to imbibe in this manner.

Now, I'm thrilled to be typing on my brand new, clickety clacking wireless keyboard. It was a birthday present from some loving family members, and now I can use the iPad to compose blog posts (although I'm still at a loss for adding pictures from here). Out with the 7 year old laptop and in with new and improved technology. Apple sure does have a good thing goin here.

***

I thought I would elaborate (as promised) on a few of the past week's ups and downs. Certainly looking forward to a free trip to Hawaii!! Go MOMMY! We are all kvelling (and really enjoying the looks on people's faces when we tell them) and fantasizing about Waikiki Beach.

I have an appointment with my radiation oncologist this week to check in and check out a few of my latest developments. Will ask about my weird invisible shingles (I know, I know, there is no such thing.), the pneumonitis (it continues to bother me...) and tell him all about our trip to Disney (he's an avid For Pete's Sake supporter).

Speaking of For Pete's Sake, I should mention that they invited us to attend their yearly Gala at the Crystal Tea Room (in the Wanamaker building) as VIP guests last weekend! Dan and I went and had a lovely evening. Did a little dancing, a lot more eating, and much talking and hand-shaking. It was great to see so many people donate money (through both a live and silent auction) to support this great cause. I hope many other families are able to have such an incredible experience and I pledged to do whatever I am able to help make that possible. To start, we are going to participate (health depending) in their next fundraiser, a Walk at Citizen's Bank Park on APril 10th. Mark your calendars, you can come too. You get to run the bases on the field!! Plus, all of the funds raised go towards sending other families dealing with cancer on respite vacations (not just to Disney, but to other locations all up and down the East Coast and beyond).

Currently, I am quite busy with using our functional kitchen for yummy (and mostly healthy) food prep (made a roasted eggplant spread tonight), attending playdates with Judah, trying to keep the house neat and tidy, and working on multiple sewing projects (both "with" my mom aka watching her work with the fabric and pattern I bought, and without). I'm definitely busy enough with appointments (last week I went to acupuncture twice!) and trying to build strength by taking yoga once a week. All of this to create a sense of normalcy and try to forget that the big scan looms.

xxoo