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

Aloha

Since I am staying true to my facebook fast, I figured I would update the state of Diamond Dansky Blitstein affairs here. Many of you know my dear mother and chose to vote (many of you on a daily basis) for her photograph in Shutterfly's Eye of the Beholder contest. The votes were to get her into the top 10 (out of 4,000-some pictures). Then, a panel of judges assessed those ten photos and chose a winner.

Well, I am tickled to announce that they did indeed choose my mother's beautiful photo of the Malibu sunset reflected in the waters of the Pacific!!

She is the grand prize winner!! What, you might be wondering, is the grand prize? Well, an all-expenses paid trip for 4 to Hawaii!

So until she decides who she's taking on her grand prize trip, I simply extend a giant Thank You to all of you dedicated voters out there who remembered to login and click on the link!! Can you believe those things are for real? And on top of being for real, my actual mom won?! I mean, she was always a winner in our book, but now it's totally official!

xxoo

See What Blossoms

Can you believe this is growing in my house?  I think it's the first non-cactus plant that I have been able to keep alive.

The past week has been full of ups and downs. 

Ups:
- attending the For Pete's Sake Cancer Respite Foundation Beach Ball Gala at the Crystal Tea Room (so fancy)
- met the Phillie Phanatic (although, after the week-long Disney experience, seeing "characters" doesn't have quite the same thrill)
- taking 2 yoga classes (and participating heavily!)
- following through on my 2010 new year's resolution to get off of facebook
- hearing Judah tell me he completed "a obstacle course" at school
- lovely acupuncture (x2)
- lovely reflexology massage
- receiving our Disney photobook from shutterfly in the mail
- tasting supa dupa onion rings at PYT
- working on a new sewing pattern (for a handbag) with my mom (when I write working with, I mean watching my bag be made)
- not 1 but 2 new episodes of 30 Rock
- discovering 27 new messages in my voicemail
- growing (not killling) an amaryllis (I bet you it blooms tomorrow!)
- 1 week closer to the big PET scan

Downs:
- continuing shortness of breath/lung inflammation
- developing a new weird and unexplained skin sensation (like a sunburn without the sunburn) that may or may not be shingles (we are on a watch and wait status - the nurse's exact words were: Let's just see what blossoms...)
- hearing a doctor say, "Well, I can't say with certainty that you don't have MS, but this would be an atypical presentation."  Uh... okaaay.
- seeing my Penna Hosp therapist for the last time (no worries, I have a new, local therapist)
- discovering AT&T was hiding 27 new messages from me
- having to leave a friend's house to go see the doctor (focaccia?  good.  homemade soup?  good.  heart-shaped melty cookies? soooo good.)
- realizing I'm not going back to work any time soon
- updating my iPad changed the purpose of the screen-lock switch to be a mute button. boo.
- still have friggin cancer (as far as I know)

I will elaborate on many of these and more in the coming posts.  For now, to bed.

xxoo

Livin It Up

Any guesses?  Post yours in a comment below.

Many people have asked me how I'm feeling now that treatment is over.  I am here to tell you there are still side effects (especially when you're in the top 2%) that just can't get enough of me.

The biggie we're currently dealing with is pneumonitis (Neumann!), inflammation of the lung, as a result of radiation.  The treatment (should your case be severe enough to require it) consists of steroids, so I said: thanks but no thanks.  We all know what happens to me on anything affecting my adrenal glands.  It's not pretty.  Instead, I'm trying to use vitamins, diet and acupuncture to reduce the inflammation.  Plus, I'm hoping it doesn't lead to something called pulmonary fibrosis, which I'm told, is a condition I do not want to have.  The real downside to this pneumonitis business is that I really need to avoid getting sick or irritating my lungs further.  This is not so easy when you live with a 3 1/2 year old.  Who goes to preschool.  And it's the middle of winter.

How sad is the swollen eyelid?

As if to underscore this impossible task, my typing was interrupted by a coughing spell so hard that it induced vomiting upstairs in the little man's room.  Dan and I swooped in to the rescue - Dan to the sheets and me to the child.  Aaah.  The joys of being a sick parent to a (differently) sick child.

I swear, I need a sneeze guard on my dinner plate.  The boogie boy has been coughing like a madman since Friday night (at 2 am).  Luckily, the cough has gotten slightly looser, but now of course that the congestion is moving north towards the head, the snot is moving south out of the nose.  I'm trying not to be a germophobe, and my skin is already super dry (as a result of this neverending winter, constant handwashing, and from treatment) but I really really really don't want to get sick(er).

Atypical lunch.  Exotic veggie Sarcone's = v good.

In regards to my diet, I've been trying to eat healthy (I type as my husband asks from the kitchen, "Are you coming to get the rum cake or not?).  By healthy, I mean a strict morning regimen of my multivitamins (shut up - I swear these gummies are for adults!), caltrate with extra vitamin D, fish oil and 1/4 cup of aloe juice (gag) chased with 1/2 cup of OJ.  I have my greek yogurt with granola and a bit of agave drizzled on top for breakfast and maybe a cup of tea and a toasted banana crunch muffin for a mid morning snack.  For lunch, I have a bowl of soup or some yums from Jules (whole wheat salad pizza, anyone?), or a big spinach salad with greek goddess dressing or goat cheese and nuts sprinkled on top.  Afternoon snack often consists of dips (I'm currently obsessed with this mexican dip from WF) or hummus on something crunchy.  Typical dinner: Israeli couscous (with mushrooms and onions, plus turmeric to reduce inflammation), steamed cruciferous veggie (such as cauliflower or broccoli) and broiled marinated salmon.

Green is good.

This is not to say that I did not majorly indulge during my birthday week(s) - the actual day was only a week ago anyway - everything in moderation, right?  That includes cupcakes and toffee too?  But I am trying to drink lots of tea (specifically Yogi raspberry leaf) when I've got the urge for something greasy, salty, chocolatey or all of the above.  I definitely feel better about myself when I'm eating veggies and drinking green smoothies (once again, I will send you over to chapterhouse, this time for a feel good banana, rice milk, honey and spirulina smoothie).  Since I'm not "in treatment", I consider my food intake to be my medicine.  At the very least, it makes me feel like I'm doing something to contribute to my wellness.

xxoo

Birthday Bonanza

Here's my purple martini, complete with edible orchid.

Wowza.  I didn't really feel much like celebrating this year.  I know, I know, I should enjoy every moment, live life to the fullest, yadda yadda.  And for the most part, I am trying to do that.  But I still am not ready to say the SCT (auto-stem cell transplant) is off the table and it's the end of cancer for us.  No one has mentioned the word remission yet, we still have a ways to go.  Even if I am lucky enough to beat this thing, I don't know that I'll ever be fearless enough to say it's the end of cancer (unless, of course, there's a freaking CURE!!!). 

 Back to the birthday.  While I typically have extremely high hopes for my birthday (I have cried on every birthday I've ever had), this year I just wanted to have a birthday.

So, when I awoke on February 2nd with "favorable" scan results (oh, and an ice storm - my husband got to hang around for an extra 2 hours before work), I was delighted.  I enjoyed some alone time in the morning, bargain shopping and treating myself to a new carseat for Judah.  A car seat?  A treat?  Yes, I'm tired of pinching my fingers in the non-Britax car seat belt and so I bought a newer, better seat that will last him up to 100 lbs.  Happy Birthday to me.

The afternoon was full of fun such as vacuuming, doing laundry and tidying up the house.  This may seem mundane and lame-O to most people, but I can appreciate the fact that I am able to do these things for myself now and I take a sense of pride and accomplishment in feeling productive afterwards.

Happiest Flowers Ever.

Throughout the day, I checked my email and each time, the Book of Face provided me with 29, 43, 17 new emails - lovely birthday wishes from old friends, family members near and far.  I certainly felt loved.  I mentioned the fact that I'd received over 100 birthday messages at dinner that night (my parents took us 3 out to Earth Bread & Brewery in Mt. Airy - very tasty beer and toasty pizza-bread), including a video-serenade from my 4th graders that brought tears to my eyes (made by my tech savvy co-teacher at school).  Dan's response: Yeah, there's Steeler Nation, then slightly below (in terms of sheer number of people) that is Mia's Fan Club.

Hard to tell here, but it's purple (duh).  Now on our bedroom wall.

Cards, flowers, artwork, new boots, Georgetown cupcakes, gift certificates, new music, chocolates, homemade toffee, flannel pajamas, delicious dinner with my friends (I'm still giggling today), new stamps plus purple ink and sparkly stickers:  I truly do feel loved.  I might even say that although I shed a few tears, this was my best birthday yet (without a doubt the one I've appreciated being here to enjoy the most).  Sometimes I guess it pays to not get too excited for your birthday.  You might just be surprised.  (And also, thank you to everyone involved in making it a lovely love-filled birthday time.)

Milestone note:  I got my hair cut last week.

Dibbs on the LEMON!!  DC Blitsteins ROCK!

This did not feel as monumental as I thought it would, but at least now there exists a style upon my head.  I've made the decision to keep it short at least until my PET scan results are in.  My reasoning being if it's SCT for me, I don't want to have to lose lots of hair a second time.  I will say this about short hair:  The cut truly does matter.  If your stylist gives your head the wrong shape, you can very easily look like a 12 year old boy.

Luckily for me, I have both an excellent stylist and my hair is growing back just as thick as before.  For some reason, the front is taking a while to get long, but at least I have full follicular coverage.  When I look at pictures of myself from a few months ago, I can't believe I thought I had hair.

Love you guys.

xxoo

Health Services

Have I mentioned there are excavators doing work on our street?

Correct me if I'm wrong, but if there is a department entitled "Employee Health Services", wouldn't you think that the jobs of the lucky employees working there would include serving others?  The word "service" can be so deceiving.  And while I'm on the subject of health services, let me just ask if it takes anyone else's ONCOLOGIST a week to return a phone call.  Am I currently in treatment? No.  Am I currently in remission?  No.

Hmm.  Let me ponder this one for a bit.  I am okay with not being priority A #1 patient.  If you are not concerned about me and my cancer, grrreat!  I can get on board with that (at least with the help of my qualified therapist).  But what I don't understand is how a doctor's attitude toward patient care changes completely the minute said patient is not currently undergoing any medical procedures.  Oh, wait a minute, now...  I just had a scan!  So that doesn't really follow that logic either.  Hmm.  Back to square one.

I'll back up a bit for those of you feeling some confusion at this juncture.  Last Wednesday, I spent the day in the ER, was scanned for "routine lymphoma" as well as to look for a pulmonary embollism.  Luckily, the preliminary results of the CT scan were "favorable" (as noted by my radiation oncologist - he who actually returns phone calls with results) and no new growth or clot was detected.

I explained in the previous post that I had been feeling shortness of breath, rapid heartbeat and dizzy the past few weeks.  These symptoms worsened in the days just before the scan and did not go away as soon as the results were received.  I know it's connected to anxiety but not caused by anxiety.

After seeing my primary care doctor on Friday morning, we determined that 2% of people taking one of my meds (which, I might add, I had taken years ago with no problems) can experience these side effects.  Did you know that only 2% of NHL is Primary Mediastinal Diffuse Large B Cell?  If I were Frank from 30 Rock, my hat would say TOP 2%.

Dang it.  So I stopped taking that drug pronto and am now on a strict regimen of multi-vitamins (yummy gummies), caltrate (w/ extra vitamin D for my D-ficiency) and as of this week, aloe juice (I'll get to that in a future post - gag me with a spoon).  I am still having some shortness of breath, but it's definitely improved over the past week.

Today, I was supposed to see my employer's doctor.  Just a check-in to see what my current medical status is (and if I am ready to return to work).  I had asked my PCP to write a letter updating my employer (oh, the mystery), which she did and faxed yesterday.  Of course the employer's HEALTH SERVICES department had no record of this letter (I got a strange deja vu feeling while dealing with this business this morning...).  I spent an hour waiting for the doctor's office to re-fax the original letter because I, the employee, cannot be served by the employer's doctor until they have a letter from my personal doctor. AAAAAAAAAAH.  I left for my next appointment (thank heavens therapy was well timed) and had to reschedule the Employee Health Services examination for next week.

After therapy, I stormed my oncologist's office for my scan report.  Turns out Doc was given 5 messages ('doc'umented) and the ladies gave him an earful for his failure to respond to any of them.  I sat and had a chat with my nurse practitioner and we discussed the report and bloodwork.  The bloodwork came back 99% normal (my phosporous levels are low - go figure) and the scan, as I've said before, had favorable results.  The mass is smaller (than the previous CT from July 2010? this is what's written as the compared image in the report) and with less attenuation (which means it's weakened -> less dense).

***

(finishing this post multiple days later)
I still haven't spoken with the doctor about this, or anything else for that matter, so I have some unanswered questions.  Tomorrow I return to Employee Health Services in an attempt to see the doctor again.

I don't want to seem ungrateful for my job or for my outstanding benefits.  I am very appreciative for all of the non-issues in my life, even though they don't always seem to outnumber the frustrations and disappointments.  I simply want to be treated like a patient/employee/human being who is more than an identification number or a statistic.  Furthermore, I want the people who are in charge of my benefits to have the sense and decency to treat me this way.  I know this is asking a LOT, especially when it's more common to speak to someone (representing a school district) who addresses a group of people as yous.  But I really do believe we can do better.  If we can't treat our employees with more respect, what honest expectations can we have for our students?

Upcoming posts include such topics as:  Birthday Bonanza, Waiting for Scans, and Living With a Compromised Immune System (and a 3 year old).

xxoo