Tuesday, August 31, 2010

Day 12 and Beyond: Good Times

"These are the days..."
--Natalie Merchant

The race is on.  From now until next Thursday, I will attempt to accomplish all of the things I wanted to do in the past 2 weeks or need to get done in the following 2 weeks.  I am a laundry-load-running, toy-tidying, thank-you-note-writing, back-to-school-shoes-for-Judah shopping, pancake-making, book-reading, movie-watching, granite/paint/new sink/faucet/cabinet hardware-choosing, blog-posting machine.  I will squeeze as much life as possible out of each 24 hour segment that remains between now and September 9.

On Friday, my baby brother, who is not only now an adult, but also a husband (sorry, Julia, I still find it hard to wrap my head around) flew in from California.  Since then (and after a trip to have a new string put onto my guitar), our evenings have included private guitar concerts and sing-a-longs as Uncle Eli delights Judah with his rock star skills.  It's been wonderful to spend time with him (we do get along now), especially as Stand Up 2 Cancer (his employer) approaches their second live show (yes, this is a plug, and yes, you all should be watching on September 10 at 8 pm on almost any given network) and I'm guessing it's crunch time back in LA.  I was fortunate enough to have been at the first live telethon 2 years ago and I would so be there again next week if it wasn't for that durn chemo I am scheduled to have the day before.  This year, I'll be watching from my chaise.

Definitely did not expect to find an iPad in this box.
Eli's not the only great thing that arrived on Friday.  My brand spanking new (surprise) iPad arrived, too!  Wahoo!  Ever since then, I've been an iPad fiend, exploring the apps, reading samples of all of the NYT bestsellers, and I am anxiously awaiting the purple case and screen protectors I ordered for it, so Judah can also use the internet on his own (a touch screen requires much less eye-hand coordination than the touch pad mouse of a laptop).  SO fun!

So Eli being here has been great, getting past the Day 7-10 hump, and enjoying my new tech toy also terrific.  However, this afternoon, the icing on the cake rang my doorbell at approximately 2:15 pm.  A township police officer stopped by (I would've taken his picture but I was rendered speechless by his presence alone and simply lost the ability to think straight when I heard what he had to say).  He held a letter in his hand, my letter to the high school administration as well as my township ward commissioner regarding the disturbance of the peace (um, the marching band practicing in my front yard) and how it went against municipal code of LAW, bay-beeee!  And what he had to say was... the drummers who practice in the front of the building will now be practicing in the stadium field!!

Now that I'm thinking about it, he did not mention anything about the location of the full band practice changing, but he did give me his business card and tell me to call him directly should I have any further trouble.

Oh my sweet heavens, my heart is singing, and I am happy today.  The officer's presence even tempts me to ask the ultimate question:  How Do You Like Me Now, B*%#$@es??  (Was that wrong?  Did I take it too far?  Perhaps, but we'll have to see how things go 'round my next Day 7 and if my peace is again disturbed, I stand by my expletive.  And I will be giving Officer G. a call.)

Because I'm in such a happy mood, I will save yesterday's more aggravating story of dealing with my employer (we'll call them the School District of Enfuriousity) for tomorrow.  For at this moment, I hope you can feel my exhiliration through your computer screen and take at least a small amount of pleasure in my victory over some 15 year olds with drumsticks. 

xxoo

Sunday, August 29, 2010

Team Mia Appreciation Day

I've got the Emmy's on, and aside from the Jimmy Fallon-induced smiles, I am mostly just listening to all of the winners' acceptance speeches.  Which leads me to the only way to follow up a (yet incomplete) compilation of chemo/cancer side effects: with a post about gratitude. 

I hereby declare tomorrow, August 30, 2010, the first (tri-annual) Team Mama Mia Appreciation Day.

I have been working these past few weeks at recuperating from my 4th dose of magical toxins while my friends and family have been faithfully calling, sending cards and emails and texts and packages, cooking/sending/bringing meals, driving me to and from doctors' appointments/hospitals/scans/acupuncture treatments/massages, picking up random food cravings (including trips to multiple supermarkets) and prescriptions, taking care of Judah (this deserves it's own special day), tickling my back, recording my medications, washing dishes, cleaning bathtubs, walking Mooshu, keeping me company, working on a live cancer show, listening to me, giving me advice, babysitting, making me laugh until I (almost?) pee in my pants, sleeping in air conditioning (even on perfectly cool nights, according to those with competent internal thermometers), waiting on me into the wee hours of the morning, telling me I'm beautiful, tolerating my moods, suggesting foods or NOT discussing foods (whichever is more appropriate at the moment in question), staying overnight in the hospital with me, fetching nurses for me, answering phones, making smoothies, crying with me, laughing with me, pushing me to do healthy things when I have no desire or energy to do so, worrying about me, praying for me, letting me wallow in misery (or sometimes not), running baths, wiping feverish sweats with clean washcloths, popping popcorn, giving me injections, singing songs, cheering me on while I swallow abnormally large pills, and more. 

It's you who bring me comfort in the fact that while none of this cancer was planned or welcomed, I am truly one of the lucky ones.  I have an enormous amount of emotional and physical support and I will get through this because of that support.

Although there will be no candy-filled coffee mugs or keychains with thoughtful puns handed out, tomorrow, as you go about your business, whether you're going in to set up your classroom, or you're stuck in traffic on your way home from work, please know I'm thinking of you. 

Though I can't name everyone individually, I want to make sure you all know - including the major players who are with me 24/7 as well as the wonderfully persistent members of my fan club (who always leave positive comments and are keeping Hallmark in business), and those of you who I hadn't heard from in 10+ years, but who contacted me to share your concern and offer words of encouragement - how important you are to me.  You done good.  And by the way, keep it comin, cause I'm not done yet.

Thank you.

xxoo

I'll Have a Side of...

I have this same sign in my classroom!  
You know you're special (or have a truly serious illness) when you don't have to wait in a waiting room of an ER.  I sure know I'm special (or have a truly serious illness) because this morning, I did not even go near the waiting room!  They took me back right away and within minutes, I was in a gown (open in the back) in my very own private (glass doors and everything) room in the ER triage department.

It's important that I mention that this was at Abington Hospital (NOT an urban center of round-the-clock crisis) and I went in at 9 am on a Sunday morning.  But still...

I'd been having some itchiness at my port site for a few days, but the skin was dry and there was nothing noteworthy emerging from the needly-prick scab.  Then, this morning when I woke up and it was still itchy, I noticed some redness on the skin.  I called the doctor's answering service and was told to go have it seen at the ER to rule out infection.  Apparently an infected port is a big deal.

Luckily, the attending physician did not think it was anything beyond some contact dermatitis (I'm not going to lie, I do enjoy learning all of these fancy new words) and that I probably had an allergic reaction to whatever they used to access my port last Tuesday.  All I need is a little Benadryl cream and I'm good to go.
Me and my new friend, John.  We traded important bald secrets.

I was fortunate to be treated by my nice friend, John, pictured here.  In all honesty, I'll take a bald man over a pregnant woman any day of the week and twice (or once, as the case may be) on Sundays.  It makes me feel like I have hairless comrades (who are not "expecting") in a world where everyone seems related to Rapunzel or whose belly button just popped.

After having only left the house once in the past 12 days (to go to the very exciting home of my parents), I was giddy at the thought of leaving the ER to do some shopping (no child with me, just me and my caffeine and contact lens-deprived mother).  Whole Foods!  What a thrill.  As this was the longest period of time I'd been on my feet in almost 2 weeks, my leg muscles were a bit shaky.  It's so bizarre that yet another one of the side effects (indirectly) of all of this is weakness.  And even though I'm supposed to be strong (can you see me pumping my fists?) and focused, I'm just trying to push a shopping cart through a stupid supermarket.

I was saying to my mom this morning, en route to the ER, that I would bet there are people in the world who would willingly sign up for this kind of challenge.  It's that same type of person who does crazy things like bungee jump or compete in decathalons.  The yeah-right-cancer's-not-so-tough-I-know-I-could-lick-it kind of person might volunteer for this.  I am not one of them.  I don't like to run (or walk, really), or do most things that would bring about a sweat of any kind.  I like to read and write and craft and shop.  Call me lazy, call me a nerd if you will (I'm not offended, but I am relaxed!).  I just don't find joy in a physical challenge (Walter's Wiggles was for you, Daddy) and I'm certainly not finding this particular Double Dare episode of cancer all that pleasurable.

It might be all the side effects.  Aside from the usual nausea and fatigue (although I did hear through the grapevine that some people don't even get the nausea -snarl- and most others actually respond to the nausea meds), there are a plethora of other interesting and time consuming side effects of having cancer and being treated with chemotherapy.  I might have appreciated a heads-up.  So for those of you reading this who are just starting out on your own cancer journey, don't say I didn't warn you.

Cancer/Treated with Chemo:
Common side effects: nausea, fatigue, pain, bone aches, baldness, taste disturbance.

Possible side effects (of the common side effects):
-all encompassing loss of appetite 
-loss of appetite for anything remotely healthy
-dehydration (occasionally caused by crying)
-severe nausea
-frequent inability to form a coherent sentence aloud or recall words (heavy use of the word "thing")
-muscle soreness
-headache
-low grade fever
-sweats
-chills
-tingly/numb fingertips
-poor circulation (your hands will fall asleep if you try to hold a book up in front of your face for too long)
-blood clots
-sores in your mouth, etc. (according to the nurses, your "mouth" stretches all the way from the hole in which food enters your body to the hole where food exits your body)
-acid reflux (including persistent belching, talkative tummy and the simultaneous sensation of hunger and fullness)
-fuzzy vision (inability to read the cable tv guide at the bottom of the screen)
-memory loss
-tummy aches
-pill anxiety
-pill withdrawal
-difficulty swallowing
-diarrhea
-constipation
-weight loss
-weight gain
-irritability
-anxiety
-depression
-insomnia

Call your doctor right away if any of the following occur:
-fever over 102
-anything swollen, red, hot, itchy or exuding pus of any type
-percocet doesn't help
-no pooping in a week
-too much pooping in a day
-strange bruising
-your employer wants you to visit their doctor
-you haven't gotten a call back within 20 mintues
-you need to know you're normal and that even though you're extra sensitive to everything, he and his team are there for you

***

During our office visit last Monday for fluids, Dr. Henry (just back from vacay) sat with us to answer some questions about the next few months and we did get some encouraging news.  First, I don't need to have any more scans until after the 6th round.  I will have a CT/PET 3 weeks later (mid-October) to see how well the chemo worked.  Then, (since he is leaning towards doing the radiation therapy) I will probably have 2+ weeks of daily radiation for 15 minutes each day.  The only side effect he gave me was fatigue, but I'm sure I'll come up with something else.

Dr. Henry also explained why he believes I must taper my Prednisone dosage in order to avoid withdrawal symptoms (such as my tumor swelling so large it causes difficulty swallowing: see Possible Side Effects, above).  Apparently I am one of only 2 patients he's ever had to have this problem (at least I'll be memorable), whereby when I stop taking the drug at it's high dosage of 100 mg after the first 5 days, my adrenal glands do not turn back on -like they're supposed to- to start producing the body's natural version of Prednisone.  So I really am special (in addition to having a serious illness)!

Finally, the best news we got was an answer to the question: when can we start trying to get prego again?  Dr. Henry, oh dear, sweet Dr. Henry, said right away.  So after the chemo and radiation are completed, as soon as I'm feeling up to it, we have the green light to get back into the baby-making game.

I know you were all wondering, but afraid (and rightly so) to ask.  The whole privacy thing is an issue for another post.  Not that I was ever shy to tell people about the intimate details of EVERYTHING, but when you are going through fertility struggles, other peoples' curiosity can frequently stir up your own heartbreak and just plain old piss you off.  As I've heard from many people who went through similar fertility issues, I know I have a crowd behind me on this one.

I realize I am a particularly greedy cancer patient.  Not only do I want my own life back, but I want to create more.  Call me crazy, but I have spent my life wanting to be a mother and I will do everything within my power to increase the size of my family and give my son the sibling(s) he so desperately desires.

As we close on summer vacation (Dan goes back to work tomorrow, waaaah), I am relieved to see that there has been actual passage of time.  This is surely the first summer of my life I have not been sad to say hello to Fall (okay, except for the year I got married, but that was different - everything then was going according to plan).   It's hard to believe that this all started at the end of May and that now September is just a few days away.  Even though I'm not done with treatment yet, I've passed the halfway mark and I can look back on the past 3 months as a survivor.

xxoo

Thursday, August 26, 2010

Movin Right Along

With the taste of milk of magnesia fresh in my mouth, I write to you as the cicadas are still singing their Day 9 morning song.  I have relocated from the bed to the chaise (Judah asks, “why you over here now, mommy?”) for a change of scenery as well as a firmer cushion under my rear.

The past few days have been looooong.  Day 6 was our trip to Radnor for fluids.  Day 7 was our return trip to Radnor for a throat check and more fluids.  Too many rides in the car for a girl with an upset tummy and a proclivity for motion sickness.  While we did manage to outsmart the fever (so far) this round, I ended up with a mean sore throat and that old familiar “hit by a truck” feeling on Day 8.  I would like to officially credit my mother for the pre-Day 7 hydration idea (although, for the life of me, I’ll never know why the nurses didn’t think of this on their own).  I suppose instead of being hit by an 18 wheeler, it was just a little old 12 wheeler this time (is there such a thing?).

Basically, everything just hurts.  I’m not trying to complain about it (although I have requested a pill, in suppository form, that somehow inserts a rainbow into one’s body), just trying to describe the sensations that go along with the after-effects of chemotherapy.  Everything just hurts.  Soreness comes and goes in different places in my body, from the back of my neck to my underutilized leg muscles.   Dizziness comes if I try to hold my head up on my own for too long (in excess of 30 seconds) and a round trip to the toilet can get my heart rate a-pumpin.

But today is better than yesterday.  I took a bath (with salts – thanks again, girls) which improved a number of sticky situations.  Most importantly, I smell a lot better now.  Also, one of my two remaining incision stitches finally worked itself out (one biopsy stitch still protrudes annoyingly from my chest).  Finally, my head feels minty clean (I lose even more itty bitty hairs while bathing due to the lathering of shampoo against what stubborn follicles are still attached), and now dressed and back in my chaise, I can feel the cool breeze blowing by my scalp.

An important package arrived this afternoon.  Fresh off the UPS truck (with melted ice packs included) is a 3 lb. bag of white m&m’s!  Many of you who have been following this journey from the beginning will remember my all-important image of white m&m’s (standing in place of my rock star white blood cells) kung fu fighting the blob that is my (no longer as cancerous) tumor.  HI-YA!  It helps, when I am chained to my bed (or luckier, to my chaise) for hours or days at a time, to have a concrete image to look at behind closed eyes. 

It goes this way with children, too.  They like to have material objects to help them understand concepts and/or things they cannot see, such as cancer.  This led to my idea to bring in white m&m’s when I go to see my students in September.  Hopefully, it will help me both explain to them why I won’t be back right away, and try to answer all of their impossible questions.  At the very least, they’ll get some chocolate out of the deal.  Can’t lose with candy…

xxoo

The Burbs

I used to like living in the city. Love, even, the hustle and bustle, the anonymity, the commotion. Even the sounds of traffic did not bother me.

Then we lived on Mildred Street. The width of one car, there was no room for parking and every sound bounced from one side of the street to the other. It was a cute little trinity, with just enough room for me, Dan and Mooshie.

But Shane and his girlfriend lived across the street. I wouldn’t have minded so much or cared at all about his existence if it wasn’t for his big fat motorcycle that he liked to park on the sidewalk in front of his house (and directly across from ours). It wasn’t the parking of the motorcycle that bothered me, as much as the starting of the engine at, say, 6 am. The noise was much like I would imagine the eruption of a volcano after having been dormant for 40 years, often yanking me out of sweet slumber or just plain old scaring the shit out of me.

Being the proactive person that I am, I asked nicely. I left notes. To no avail. Despite the fact that Shane was detested by at least every Mildred Street inhabitant (I’m sure the neighbors living on the surrounding streets hated him as well), the best he could do on a good day was to wheel his bike out to the corner and rev her up just feet away from our front door.

So we moved out to the burbs. I thought we would have a quiet little house on a peaceful little street. Dan even got a job around the corner at the high school I attended. He would walk to work and everything would be so lovely and olden dayish. And it was. Until the last 2 weeks of the summer of 2006, when the marching band began their daily practice in the parking lot around the corner.

Oh. My. God. Having bought our house in the spring, I had no inkling of what we were in for. Drums, xylophones, trombones, whistles – the whole bit. The director even thinks it’s appropriate to plug his ipod into loudspeakers so the kids can practice marching in time to what the music is supposed to sound like.

Now, for the last few weeks of summer, this noise goes on ALL DAY LONG. After school starts, they simply start just before dinnertime and do not stop until after 9 pm. It’s horrible. I did not buy this house for the opportunity to listen to overachieving teenagers bang on things (when I know for a fact that their parents won’t let them practice in their own houses) for hours at a time. I have tried complaining to the administration. I have left messages on the school’s answering machine (especially back when I had an infant in the house who I was desperately trying to sleep-train). Nothing has stopped these demons from drumming me out of countless hours of peace.

Now that I am lying here, trying to beat effing CANCER, I am thoroughly convinced that they are sent by the devil to try and deter my focus. They are trying to pile on the stress and raise my blood pressure with the incessant banging. Some days, I can’t tell the difference between the drums and the renovation workers throwing large chunks of trash into the dumpster of the driveway across the street. The sounds echo back and forth across the soccer fields and I can only imagine how much worse it must be for the people who live directly across from the high school. It just goes on and on.

I realize my husband works for the high school and we are residents of the township and by going public with my anti-band-practice plight I could be subjecting us to some serious neighborhood shunning. But people, don’t you see? My life depends on this. It’s 65 degrees outside and yet the windows in my room must be closed and the air conditioner blasting (on it’s loudest setting, I might add).

I CAN STILL HEAR THEM.

If it sounded like music, I might be able to tolerate it. I am a singer, a former piano (and flute) player, and a lover of all things musical. Hence, if what they were “playing” resembled more than a toddler banging on pots and pans (also a sound I am acutely familiar with), I imagine they might have my support. But people, it’s not even good. Not good at all.

You might be wondering about a compromise. Isn’t there some other place they could practice? Maybe, like, on the field where they actually perform? Yes, I wonder this as well. We would not be AS bothered if they simply moved their practice to a more logical location (and it’s not that much farther away). The racket would just be less dramatic.

But now, in the past 4 years, this “band” has kept my child from sleeping (for naps and at night, mind you), as well as kept me from relaxing and unwinding after numerous days of hard work with the youth of America. And we have come to the ultimate affront. They do not care about cancer.

Wyncote residents, stand with me. Grab your megaphone (or just steal theirs). Let's paint signs, storm the parking lot and kindly tell the "rhythm keeper" where to shove that freaking glockenspiel. I am juiced and will be happy to lead you all, just as soon as these throat sores clear up and I have enough mojo to stand for more than 3 minutes at a time.

xxoo

Tuesday, August 24, 2010

The List (Volume 1)


Behold. It is Day 7, my eyes are open and I'm writing. After a trip to the doctor's office yesterday for hydration, I graced the nurses with my presence yet again today, due to a sore throat. Don't know if it's just sores from the adriamycin (yet another fun side effect) or a viral infection, but I got some extra fluids, a percocet and an anti-viral prescription just to be on the safe side.

Having survived 2 round trips on the Blue Route in 2 days (including Dukey Day 7), I could not resist writing this list. Mostly, it's just a lot of thoughts that have been running through my head, but I wanted to get them down before they were just fleeting memories. I have a good history with lists, considering when I was in college, I compiled the 257 most important qualities I was looking for in a man. To this day, I swear Dan checks off at least 200 of them.

So here goes. Get comfy. Here are 70 (or so) of the most important things I've learned about having cancer, dealing with treatment, and life in general in the past few months (please excuse the lack of capitalization and proper punctuation - it IS Day 7, after all):

1. always ask for the freezing spray
2. if it’s not a thunderstorm or the high school marching band disturbing your afternoon nap, it will most certainly be screaming sirens, landscapers or burly tree men using an excruciatingly loud mulching machine (or a combination of them all)
3. most of modern medicine is comprised of guesswork
4. your mouth and your stomach won’t always agree
5. you are the only person inside your body, aka the doctors and nurses cannot read your mind, so speak up
6. try not to kill your husband – it’s much harder to do this alone
7. the only person who moves fast enough is your mother
8. get a port. you might need your veins again some day.
9. ask for a 3 2 1 countdown before being stabbed with a needle of any type
10. painkillers were invented for a reason. use them (you know, in moderation)
11. when in doubt, call (or write to) a sick person. if they don’t want to talk, they won’t answer the phone. it’s better to have called and left a message than to leave a person feeling lonely.
12. other peoples’ cooking can be as good as your own (or better)
13. sometimes you have to just leave the house to let the merry maids do their work
14. it’s okay to proclaim your love for a cleaning lady
15. we must get more scientists working on a faster, less invasive traveling method than driving a car. are we really that far off from being beamed somewhere?
16. dr’s offices and hospitals are a lot like movie theatres. get there early to get a good seat, wait around for a while, and bring a jacket.
17. iphone (or some gadget of the like) is essential.
18. having your own conversations with medical professionals about managing your bowels is acceptable, but listening to others’ is not.
19. MYOB (old meaning: mind your own business) new meaning: make your own blanket. use bright colors and cheerful patterns with objects like bicycles and fireworks printed on them.
20. BYOB: bring your own blanket (the crappy tissue- thin ones at the dr’s office will not keep you cozy and warm)
21. keep a good pillow in the car at all times in case of emergency. your head can get awful heavy.
22. cancer sucks.
23. chemo brain can be contagious.
24. some pills are good. too many pills are bad.
25. sensitive in spirit equals sensitive in body.
26. appreciate every day you can walk to the toilet on your own/don’t feel like you want to hurl/can drive to target/can put your kid to bed
27. a card sent in the mail really can cheer someone up.
28. not every woman with cancer has breast cancer. not that I’m complaining, but where are all the lymphoma stories?
29. after chemo, giving birth doesn’t seem so bad.
30. online shopping goooood.
31. some days you just want to forget about cancer completely.
32. it can be liberating to show a smoker your baldness (especially as he tosses a match out the window of his car).
33. cancer can happen to anyone. even me or you.
34. your child can get through this too. and be your biggest source of joy and pride.
35. crying is definitely allowed, even if it contributes to being dehydrated.
36. prednisone can make you edgy. hee hee.
37. your life can change in an instant, when you least expect it (but try not to expect it)
38. don’t forget to eat.
39. taco bell can taste good, look bad, feel worse.
40. it’s worth doing chicken parm taste tests.
41. have a big freezer. people are generous.
42. sing opera while getting injections. it makes it burn less.
43. guided imagery can actually reduce your pain.
44. people need people – why try to do this alone?
45. some days you will want plain chips, some days are for ridges.
46. gear up for treatment days by listening to music that makes you want to karate chop things. at least you’ll smile as you’re falling asleep.
47. use glitter on your cheeks, reapply as needed.
48. try to wear reflective jewelry whenever possible. you will need all the sparkle you can get.
49. silence is underrated
50. yes, that noise came from my stomach.
51. it helps to have a doctor with kind eyes.
52. wear things that make you happy, like purple tie dye and sparkly nail polish.
53. make nice with your pharmacist
54. close your eyes when they lay out all of the materials for putting needles in your body (you’re better off just not seeing the size of that sucker)
55. one must try to ignore other peoples’ trivial complaints about their small, na├»ve lives, untouched by crisis. the truth is they just don’t know.
56. I am truly loved. glad I found out sooner rather than later.
57. there’s no replacement for a good spot to lay your head.
58. antibiotics cause diarrhea, absolutely everything else makes you constipated.
59. shampoo commercials are not made to intentionally make you feel bad about your lack of hair.
60. hair loss only occurs in some places. speaking of which, why do I still need to shave my legs when I don’t need a hairbrush?
61. TGFLD (thank goodness for lemon drops)
62. the insured are the lucky ones.
63. all cancer survivors deserve free vacations to faraway islands- family members, cabanas and beach toys included.
64. bras are optional (it’s okay to opt out)
65. don’t fire your mother even when you’ve asked (3 times) for decaf tea and she gives you caf.
66. it is possible to have a wild assortment of iphone apps simultaneously: ichemo diary, p tracker, taco bell locator and craigslist pro.
67. hold your nose when they flush your port. there is a smell you will never forget all your live long days.
68. try not to put EVERYTHING else in your life on hold while you go through treatment (as in: now is a great time to remodel your kitchen or buy a new used car!)
69. don’t overdo it (most doctors, while very intelligent, do not know what kind of energy is required to teach/manage/inspire 34 nine year olds in a classroom or that when you work in public education it’s not possible to take a half day every day)
70. it IS okay to call the doctor (love that super secret phone number) about every little thing. it’s the not calling that can get you into trouble.
71. write thank you notes on your good days. it's important that the people around you know how much they are helping (especially those daring and caring enough to muck around in the trenches right alongside you, even when you're mean and impossible to help).
72. try not to think about the future in terms of months, or even days. stick to minutes and hours.
73. facebook is definitely better than twitter
74. temperature control is a must (read: get a good air conditioner). your family can always button up. you, however, cannot remove a layer of skin.
75. it's okay to mix eastern and western medicine. massage and acupuncture feel good, while a magic poison cocktail kills cancer cells.
76. take baths. if you're too tired to stand, then just sit. lay. use salts, even. you've got to wash sooner or later, so you might as well make it your day's activity.
77. sleep. take a pill and get some sleep. there will be time for falling asleep on your own later
78. deep breaths. lots of em. oxygen is your friend.

xxoo

Sunday, August 22, 2010

Things Are Looking Up

Get ready, folks. I know I am. Paper Source (only the most amazing stationery/scrapbooking/crafts for the crafty store ever) has opened a new location here in Pennsylvania! Not just PA, but in Ardmore, about a half hour from where I live.

I will admit, I have a bit of a stationery obsession, I guess it goes hand in hand with my penchant for lovely looking things and my desire to make anything that is connected to me lovely looking as well. But the last time I was in a Paper Source was more than 3 years ago in Berkeley, CA. I purchased my favorite rubber stamp of all time, "small bear holding a heart". I have used him countless times to adorn everything from envelopes to CD labels and he is still going strong. But that doesn't mean I don't have room in my collection for "love goose" (how can you not want a stamp called love goose?) or "double happiness" (even if no one else knows what the Chinese characters mean). I am SO there just as soon as I can walk downstairs without getting dizzy!

No, no, things really are looking up. I don't want to speak too soon, but this is probably the best Day 5 I've had so far, with the help of my wonderful family and my lemon drops. I am able to keep my eyes open and hey, I'm in the mood for typing!

I realize I promised to detail Judah's renal scan and our ever-so-exciting trip to Sesame Place, so while I await my potentially tasty chicken parm's arrival, I will begin with Judah's journey at St. Christopher's Hospital. For those of you wondering why not CHOP, St. Chris does the most renal scans of any pediatric hospital in the area, and Judah's doctor sent us there for this procedure (for the second time - the first was done when baby J was just 6 weeks old).

Sunday night (eve of scan), I had a very hard time sleeping. I feared the worst, that Judah would have an allergic reaction to the sedation and not even be able to complete the procedure at all. I don't operate well under this kind of worry, especially when I am torn between knowing too much about what's going on inside of our bodies and (due to these latest medical findings in my own person) the need to know everything.

We told him very little about where he was going, simply saying it was going to be like the time the nurse put jelly on his belly (his yearly kidney and bladder ultrasounds have familiarized him with hospitals) and that the doctor just wanted to check on his insides to make sure everything was working properly. He didn't seem too disturbed by this, considering he's held my hand through the daily injections given to dissolve my blood clot last month (always remember to sing while your 3 year old is watching - it makes it burn less) and he's seen plenty of pictures of me smiling with IV lines hooking me up to the powerful medicine that is getting rid of the boo boo.

As it turned out, he did not cry at all through the entire procedure. They gave him some oral sedation, after which he did not seem to mind the 3 attempts needed to get an IV in him and he was so fantastic for the remainder (1 hour) of the process that the nurses lavished him with loads of stickers and love. He only cried after it was over when Dan gave him apple juice instead of orange and gosh darn it, he put the wrong DVD into the machine!

Waiting not so patiently at home, I cried a lot more, mostly after I found out that Dan had left his cell phone here. I will give him a little leeway here, seeing as how he had to wake Judah up extra early to get there by 7:30. Not altogether back in the swing of getting out the door with a timeframe in mind, what with no summer school this year...

Anyway, Judah (and I) survived and he was a bit goofy (as the nurses warned us he would be) for a while afterwards, but did not seem too much worse for the wear. We have an appointment on Sept. 7 to review the results of the scan with his urologist. Keep checking in for more on September in upcoming posts.

Now. The following day was my last day before Round 4, so we thought it would be the best time to take Judah (as a reward for all of his "suffering") to Sesame Place, where he's been pretending to go for months. I will give a rundown of our day in numbers:

15 - dollars spent on parking
150 - dollars spent on entrance to the park
1 - rides enjoyed by Mia (lazy river)
0 - rides enjoyed by Judah (cried all through lazy river) or Dan (took pictures of lazy river)
0 - times Judah used the potty (not counting the pee in the travel potty of our trunk before we left)
40 - minutes spent waiting in line for something
2 - ice creams purchased (for Dan and Judah)
1 - root beer float (for me)
1 - looooong parade (Judah atop Dan's shoulders, after correcting his misunderstanding that he wasn't actually in the parade)
1 - too loud monster rock concert
2 - sightings of Elmo
6 - minutes in the car before Judah fell asleep

Luckily, we get to go back (1 ticket = 2 day admission) and do it all over again before the end of the season! Can't wait.

Tomorrow, a visit to Dr. Henry at the Radnor office awaits for some jazzy fresh freezing spray (numbs the port site before accessing with a larger needle than I'd ever liked to have laid my eyes on), fluids and IV zofran to foil Day 7. I continue to manage the slow progression off of pukey P (prednisone) with chasers like chocolate milk (organic valley is ze best in the world) and neopolitan klondike bars (What would you doooo? Well, I would send my husband and father out to 4 grocery stores to find them.). Thank goodness at least those taste the way they're supposed to.

xxoo

Thursday, August 19, 2010

At Last...

Let's back up a few months and start at the very beginning. When this whole diagnosis thing took off, Dan asked me to make a wish list. What things (lord knows I love me my things) did I think would cheer me up? The very first thing was this chair. I'd seen it in a catalog (I also lurve me my catalogs) many years ago and had never forgotten it. It looked huge, plush, and luxurious and right up my alley. Instead of a chair and ottoman (where, because of my long torso, my tush always seems to fall through the crack - no pun intended), the chaise extends the seat to the foot rest so you are comfy all over.

However, this particular chaise was a bit on the pricey side. Dan told me not to worry, I would get my chaise. I, of course, laughed him off. Little did I know (Dan enjoys surprises), he secretly contacted lots of my friends and family to tell them about the first item on my wish list and asked for any takers on making my wish come true.

Dude - I don't know where to start, but approximately 5 minutes later, he told me to call the company and order the chair. Between the car troubles, the dog getting sick, Judah throwing a fit at the thought of separating from me, and oh yeah, the whole cancer thing (multiple biopsies, waiting for results, etc.), it really seemed like nothing was going our way. Needless to say, I was thrilled to get going on something positive! **Start chaise timeline near the end of June (Diagnosis Day was June 17). Then the lady at the company told me it would be 6-8 weeks for delivery. Explaining my predicament, I asked if it was possible to speed up the delivery. She said she would write a note in the order, but there were no guarantees.

A few weeks later, I get a shipping notification in my email! Imagine my delight to find out the chaise was already on its way! I clicked on the UPS tracking link and watched it travel from Missouri to Ohio... Each day, I would exlaim with glee, "My chair is in Missouri!" "My chair is in Ohio!"

Until one day, I felt like it seemed too easy. I mean, yes it was possible for a custom chair to be made so quickly (after all, they do it on HGTV all the time), but for lil' ol' me? I checked the shipping notification email again and noticed the weight of the item being shipped. Instead of it being 500 lbs (like a large piece of furniture is supposed to weigh), it read: 0.1 lbs. Hmm. Delving deeper, I could see that what was being shipped was not my beloved chair, but merely a swatch of the fabric with which it was being upholstered. A freaking SWATCH!

So, I sheepishly confessed to my family that instead of my chair being in Missouri, it was a scrap of chenille traveling cross country to be with me. At least we had ourselves a good laugh about it. "My swatch is in Ohio." "My swatch is in Pennsylvania." Rats.

When, eventually, the swatch arrived (7/1/2010), we all took turns sitting on it. Aaah, very comfy.

Fast forward another month or so, a few treatment cycles later, and I finally called the company to see what the hold up was. I have cancer, for pete's sake, can't you hurry this thing up? At this rate, by the time it gets here, I'll be back at work and have no time to lay in it!

Wouldn't you know, it arrived just last week (along with the latest People magazine - love you girls), while we were at the beach!

Dan worked like a dog to rearrange our bedroom furniture thus completing the 2 story layout of the Wellness Center, so we could come home to utter bedroom perfection. Luckily, we have a bangin' air conditioner in our room, so I don't have to freeze everyone out of the first floor anymore. The TV is now repositioned so that we can see it from both our bed AND the chaise. And just this morning, my mom came over with a DVD player, so I can watch all my netflix videos (thank you O'Brien/Diamonds!) from the comfort of my repose chaise I. Now we're talkin.

The best thing about this chair (aside from the fact that it was only possible because of the love and generosity of the most amazing people I know) is that Judah can squeeze in right next to me for snuggles and books at bedtime.


Although "thank you" doesn't seem nearly adequate, that's all I've got for now. To everyone who had a part in this and all of the (occasionally frivolous) wish list requests, equaling total relaxation having come to fruition: thank you thank you thank you. Please know you have contributed to a big part of my recovery - not just because I have this chair, but because I really do feel so loved.

xxoo

6-4=2

Enjoy below a series of pictures from yesterday.













Having my port accessed and flushed... All clean and ready for the magic poison.










I am eating a toasted sesame bagel with cream cheese and tomatoes, hoping the nutritionist will choose this moment to check in, but no dice. I'm trying to fill my tummy before the truly nauseating stuff kicks in.





Rachel arrives before my massage! I am still mostly conscious (also pre-benadryl and ativan) and very happy to see her.






















I am now post massage/benadryl/ativan and finding it very difficult to keep my eyes open. I am receving adriamycin (the red stuff in the vile - also known as hydroxyldaunorubicin, or the H in R-CHOP) which causes the hair loss and also red pee!



In summation, I fell asleep and made it through the rest of my drips and pushes (a push drug is one that the nurse injects into your port or IV, a drip is in a bag and gets mixed with the saline to dilute the potential immediate side effects). I was super sleepy all the way home and definitely not in the mood for the music we had playing en route to the clinic in the morning (Wicked soundrack helps me get pumped for the main event - picture Rocky before a fight).

I came home and promptly sank into my chaise (stay tuned for yes, a second posting today) and remained there (except for a few trips to the bathroom) until bedtime.

This morning, I woke up, had my early bowl of cinnamon toast crunch and took my meds (I am so thankful for modern medicine and sugar cereals). Judah went to camp after his morning TV in our bed, and I am now busy as a bee typing all of this up after my traditional breakfast of 2 over-medium eggs and a slice of rye toast with cinnamon and sugar.

As you can see, I continue to be the poster child for nutritious eating. Blah blah blah. I said, I will deal with the juicer when I'm done with the pushes and drips. For now, I am staying hydrated and buying stock in lemon drops.

xxoo

Wednesday, August 18, 2010

The Eve of Day One (#4)


It dawned upon me during conversation tonight that the entire month of August (for teachers, anyway) is like the Sunday of every weekend, except drawn out to 31 days long. By the time you finally get relaxed, you have it in the back of your mind that you have to go back to work the next day. Your time to unwind is finite and pretty soon, your (breadwinning) job is back in your life, other people’s children the main focus of 8+ hours of every day (and evening and weekend…).

July is the lazy month. July is filled with TV watching and naps, shopping and leisurely trips to the pool. July is the reading month. Since summer is the only time of year I have the time and energy to read for pleasure, I have to cram in as many good books as possible. I used to be in a book club and we read together throughout the school year, but once most of us had kids, it was too hard to keep up with, and the club is no more. Still, since I get at least 5 or 6 good reads in over the summer, I can discuss them with friends all year round. July is good for that. The sofa and I become close again during this first month of vacation.

August is usually the most productive month for me, as I know September comes next and the endless items on the To Do list (that I had been creating all year long and then added to during those sluggish days of July) are not going to do themselves. Once I get started on crossing shit off, I am a machine. Watch out. I can bang out craft projects and fill out forms like nobody’s business. I enjoy being an efficient, contributing member of my household (and society).

Now that I’ve felt able to get things accomplished (bring on the to do list, baby) for the past week or so, it’s very frustrating to have to offer up my body for its next dose of poison tomorrow. I must walk into the clinic and willingly offer myself up to feel like crap on toast for the next 2 weeks. All in the name of healing.

In the spirit of cramming in as many “normal” daily activities during my feel-good days, Dan and I went to see Eat Pray Love last night. I read the book a few years ago (my final book of the Summer of 2008) and remembered enjoying it. **SPOILER ALERT** Liz Gilbert (writer of the book/main character of film) was depressed (I could relate) and her solution to recovering from a traumatic divorce was to go off for a year and travel to the most amazing places, eat the best food, and fall in love again. It’s your basic self-indulgent, girl divorces boy, boy takes all of girl’s money, girl gets advance on book deal, girl goes all into herself as she travels the world alone, girl gains 10 pounds, girl meditates, girl learns, girl finds new exotic boy, girl falls in love and gets remarried story. I was never that good at summarizing (don't tell my 4th graders), I like details too much.

There’s a certain part of the movie where she says to her best friend, “I don’t know how you’re not sick of me by now. Even I’m sick of myself!” I was like YES! I am so sick of me. I’m so sick of me being sick, and everything being all about me being sick.

Going in for treatment tomorrow is of course something I have to do. And I will try my best to focus on the promise that there will be a day when I don’t have to go back for another round. I will wear my F#@K CANCER shirt (thank you Jax) and nothing on my head (it’s an oncology office, dammit) and I will have my shiatsu massage (thank you Wayne) and come home and start to recover. Again. I will do that.

This all leads to the realization that this August may be perhaps the most productive one of my life.

**

I know many of you are wondering about a few things that I don’t have the energy to write about at the moment: Judah's renal scan, which is thankfully now behind us, my chaise (seriously amazing and I am laying in it as I type) and today’s adventure to Sesame Place. To you, my wonderfully supportive teammates, I give a guarantee. Each of these topics will be getting their own posts. They each deserve the time, thoughtfulness and effort I don’t have tonight. But they're coming.

xxoo

Sunday, August 15, 2010

Good vs. Evil

We arrived home from the beach a few hours ago to a gloriously clean house (thank you, Daniel) and a stunning new chair in my bedroom. This is the good (and it is really good). Tomorrow morning, Judah needs to be at St. Christopher's to get checked in for his renal scan at 7:30. This is the evil. I am trying my best not to have a total meltdown about this procedure, but since the whole cancer diagnosis, I find it difficult not to worry even more than I did B.C. since now all of my worrying is completely justified.

I have never been an optimistic person. I prefer to prepare myself for what will inevitably be something bad (and if the bad stuff doesn't happen now, I'm sure it's just around the bend). That means stress, anxiety, tears, insomnia, either total loss of appetite or binge eating (snack foods and other crap I definitely don't need), etc. Right now, I should be in bed, fast asleep. Too worried.

I'm not going with Dan and Judah tomorrow for a few reasons. First, I'm a weepy mess NOW, think how much worse it would be once Judah starts crying. Second, hospitals are germy places. If I catch something, I can't get my next treatment (#4) on Wednesday. As much as I'd like to get out of chemo, I can't chance it. Gotta get my poison and get that tumor the freak out of here ASAP.

So I will distract myself by going grocery shopping. Oh, wait, I can't do that because our white car is having more issues. Yes, folks, we've got car problems again. Apparently a plastic bag got wrapped around some part (an axle?) and the mechanics keep saying they've removed it all, but then we hear this noise and have to take it back so they can keep removing more plastic bits. Just one more evil thing in our lives: plastic.

No, instead of going out, I will upload pictures from Bethany. This includes pics I took of the fronters (people who sit directly in front of you on the beach, blocking your view of the ocean) with every intention of outing them. There is such a thing as beach etiquette, people, and I am conscientious about making sure my child does not kick/throw/shovel sand in other peoples' "areas", while I expect a certain amount of decency in return. And there IS enough space for all of us. It is not like we're in [insert the most crowded beach you've ever been to here], for pete's sake. It's South Bethany and quite lovely, I might add. We even saw dolphins this morning. More points for the good.

I watched Kris Carr's Crazy Sexy Cancer documentary last night. I'd seen it when TLC first aired it, but I got it from netflix for a refresher. Probably a bad idea, but I figure, what the heck? What's a few more tears in the grand scheme of things? I'm almost always dehydrated anyway. It was slightly comforting to watch and listen to honest people who are dealing with many of the same emotional issues as I am, but Kris (writer, director and star) only interviewed one person who went through chemo (and her cancer relapsed a few months later, forcing her to have a stem cell transplant). The type of cancer Kris has is so rare, there is no "usual" treatment for it. Definitely a bummer, no doubt, but it's hard for me to relate to what she deals with as a self-proclaimed "healing junkie" when I am trying to survive chemo. Still, the movie as a whole scored a few points for the good as an overall positive spin on the reality of young adults dealing with cancer.

It's hard to stay thinking positive and feeling positive about my future when the present is taking forever to get through. I'm sorry, I am not going to be growing, cutting and juicing my own wheatgrass every morning. As soon as chemo is over and my taste buds can all find some common ground, I will give some of the green juices a try (kale, I'm looking at you) but we will have to use some kiwi and agave to sweeten the deal a bit.

As a sidenote, just a helpful tip from me to the general public: if you see someone out and about, wearing a headscarf (aka looking like a cancer patient), trying to forget about her troubles for a NY minute, please do not come up and share your concern if it means including a story about someone close to you who died from cancer. It's not that I'm not extremely sorry for your loss. Across the board - that is the worst. It's just that I don't want to hear ANY stories about ANY persons who have lost their lives to ANY type of cancer. Don't care if the person was 118 years old, smoked 5 packs a day and owned their own tanning bed. Nope. Don't want to hear it. If you'd like to join the team and have such stories to tell, please pray for me silently (we are a no-cut team and will accept members of all religions). Thank you.

Back to the chair. This chair is so good, it deserves its own post. So I will save that for tomorrow, when Judah's scan is behind us and I can fully focus on all of its soft and cozy details (oh, and the people who got it here in the first place - love you guys).

xxoo

Thursday, August 12, 2010

Identification, Please?

Yesterday evening, after a delicious (and nutritious) meal of Five Guys burgers and fries, I managed to sneak in a little shopping (don't tell Dan). It was for Judah, anyway, like most things I buy, and it was just a little blue Bethany Beach t-shirt. I brought it up to the register (where of course, I managed to somehow resist the thousands of Silly Bandz on display) and handed the girl my credit card. For security reasons, I have "ASK FOR ID" written on the back of my card and so she complied.

I pulled out my driver's license and she awkwardly looked at the picture of me and then at my face. I couldn't help but wonder if she could even see a resemblance. Even I have a tough time. After all, that picture was taken in January of this year, when I had hair and probably a bit more color in my face. And it's weird because it doesn't even feel like that's me. What do other people in this situation do? Do they have temporary IDs? I have to consider this all temporary, but if I let my eyes linger on the word for too long, I begin to wonder about what life will be like a few months from now, post-chemo. One day at a time, right? And I'm supposed to be relaxing.

****

Since writing the above portion, I have been sitting here on the couch, trying to navigate my husband (driving down to join us for the feeding frenzy) through the state of Maryland by phone. Do all men wait until they are in the wrong state to ask for directions? He'll probably kill me for writing about this, but seriously, at what point on Rte. 95 does it begin to dawn on a person that he's headed for Virginia (South of Maryland- which is south of Delaware)?

At least we have plenty of caramel corn to keep us awake until he does finally arrive. Today was a day of indulging. Started off with a trip to the Penguin Diner for breakfast, where we did experience something (I consider) monumental.

Judah wrote his name for the first time.

Granted the letters were backwards and written from right to left (he does have Israeli roots), but he did it (see photo below)! And then, I stupidly (let's blame it on chemo-brain) left the paper at the diner.

Post-nap, we took him to the Rehoboth Beach boardwalk and after he rode on all of the 3 year old-appropriate rides (photos from actual camera to be posted later), I showed him how a professional plays Whac-a-mole. I must say, I have not lost my touch (yes, it's true, I was only playing against my mom, but still, I did score a 250!). I won him a little pink velour pig to go with the fuzzy stuffed mini-bug he won on the "Everyone's a Winner" magnetic fishing game. In its entirety, the outing was $8 well spent (and we still have leftover ride tickets).

The Rehoboth boardwalk did not have a DB's Fries, but I decided to do a Thrasher's/DB's taste test so as to satisfy my FF hunger on the spot. Since it was pouring rain, we did not get a picture, but I have plans to shove as many french fries as possible into my mouth during the second portion of the taste test tomorrow. Will take photos.

I am on vacation, and thus needed to get away from cancer, so to supplement my trashy magazines (purely for beach reading, I assure you) I searched for the funniest memoirs I could find. And boy did I find. If you haven't already discovered Bitter is the New Black (by Jen Lancaster), I highly recommend it. I almost peed in my pants a number of times. Very distracting and far away from the intensity of my life at the moment.

Last week, I was saying that if these cancer research foundations really wanted to do some immediate good for cancer patients, they would find a way to allow someone else (let's call said charitable person George) to take over having the cancer for a week or two. Give a patient a chance to feel normal for a minute while George manages, knowing it's only temporary, then transfer all of the evil cells back into original patient's body to resume the good fight. George won't be harmed (in fact, he'll probably have a better appreciation for his own health) and the patient has a better chance of survival, having had a brief vacay. I bet they could use magnets or something.

xxoo

Tuesday, August 10, 2010

It's Over

My 3 year old now has silly bandz. I was having a difficult time dealing with this fact yesterday when he came home from camp wearing them. After all, he is still a baby! Okay, he's not exactly a baby anymore, but he's my baby. I was enjoying that last little bit of control - over his wardrobe. I do all the purchasing and the daily picking out of outfits and I thought we could avoid fads for just a few more years (months, even?). Boy, was I wrong. He is so proud of those stupid things. He takes them off, looks at them lovingly, then puts them back on quite methodically (he only has 4). He asked for them when we came back from the beach this morning, when I was hoping he would have forgotten all about them...

At the moment, he is napping, so we are all blessed with the peace that only comes at naptime (except for the noise of the poor morons cutting stone across the canal in 95 degree heat). He came down with a fever yesterday afternoon, shortly after we arrived at the beach, and has had it off and on ever since. He even asked to come back from the beach this morning, so we know he really wasn't feeling well. Hopefully, whatever little bug he has will pass quickly so we can get him to the boardwalk and begin on the eating frenzy that is vacation.

On a separate note, the kitchen process is underway and the latest update I have from Dan (who is still back home and plans to join us here on Thursday or Friday) is that we are going to have custom cabinets made by our contractor/carpenter, so the installation is now pushed back to September. This will give us (me) more time to make decisions, since I will be able to go out and see things during my next 3rd week of the treatment cycle.

I am still fatigued (took a nice nap this afternoon) and have a hard time standing for a while (especially in the heat), but all in all, I am light years better than last week at this time. For today, the biggest dilemma I have is deciding where to go for dinner (that won't smell too nasty - still a bit sensitive in the stomach department).

Speaking of the 3rd meal of the day, here are a few of Judah's funniest recent responses when we ask him what he wants to do for dinner:

-In the car on the way home from a farm, "How about Zahav?"
-Last night, while watching Harry the Dirty Dog video, "I don't know, tortellini or sometin?"
-This morning, at the beach, he suggested, "Maybe a restaurant?"

He always keeps us entertained.

xxoo

Sunday, August 8, 2010

New Normal



I don't know anyone who enjoys doing laundry. Certainly before this treatment began, you would not find me jumping at the chance to haul a heavy basket of clothing down two flights of steps, only to have to remember to switch the lot into the dryer before mildew sets in, and then pull it all out of the dryer before the wrinkles do their thing. Oh, then there's the folding. It's not so bad if I practice a bit of FWW (Folding While Watching) and there's something good on TV. But the absolute worst part of laundry (for me) is the putting away. Weeks have gone by, new buds grown on the trees, and I have let baskets of clean, folded laundry become new pieces of furniture in my bedroom.

But, all of a sudden, those mundane tasks that I dreaded doing before aren't so lame anymore. I long for my April life, my March and February life, when I only had the fertility blues and not the I-can't-lift-my-head-off-the-pillow and the I-hope-I-survive-this-treatment blues too. Yes, I was devastated on a monthly basis when those stupid pee sticks came up negative again and again, but at least I could make myself a snack. I could DO the laundry. I could clean up after Judah. Having cancer and going through treatment is so humbling.

All I want to do is whatever I want to do and my body doesn't necessarily agree. There are so many things healthy people complain about and never give a second thought before they experience illness, myself included. What did I know of this? After all, who doesn't complain about washing dishes and tidying up and packing lunches and running errands?

People who can't, that's who. People who have it taken away and just want to suffer through the annoyances of healthy life instead of the threat of death.

Yesterday, I did laundry! I cleaned up the house! I vacuumed! I started packing for the beach! In fact, at this very moment, there is a basket of clean clothes chillin on the couch, just waiting for me to fold them (don't worry, Bang For Your Buck is on and they're showing kitchens!). It's all so normal. I love it.

Today, Dan and I took Judah to the Aquarium for the first time. He totally loved it - touched a shark, attempted the sea stars (water too cold), woke up the hippos, saw the giant crabs and seahorses. What was his favorite thing? Seeing the scuba divers in the main fish tank. There are huge stingrays, sharks and sea turtles in there and what interests him the most? The humans.

Even with all the stares (I refuse to wear a wig around all morning long - any other head covering typically screams "cancer patient"), I was so happy to be there with him to witness personally the look on his face when he saw the jellyfish tanks and the shark tunnel. It was exhausting but worth the energy (and money!). The only weird part was while Dan and Judah were having a (rather long) trip to the restroom. I rested on a bench, watching the masses line up for face painting and photos with the aquarium mascot (an oversized blue, fuzzy, walking shark). I sat there wondering how many of the people there had been or will be diagnosed with cancer in their lives. How many have it now and don't even know it? Sad and depressing. Those SU2C statistics are hard to ignore (1 in 2 men, 1 in 3 women).

Judah asked while we were in the car on the way there why I was wearing a bandana. After all, at home, I don't wear anything on my head, so for him, to see it covered is unusual. I explained about protection from the sun and how not everyone is used to seeing me with no hair, so it makes other people more comfortable. It struck me how we are each getting used to a new normal (and did I mention how it freaking sucks that my 3 year old is now used to me with no hair?).


Sigh. Luckily, he doesn't seem worse for the wear and continues to be a happy, healthy, normal little boy. For that (and the ability - however temporary - to do some laundry), I am eternally grateful.

xxoo

Friday, August 6, 2010

Oopsie

I took piano lessons for many years as a child and went through 3 or 4 different teachers. The second teacher I had was an older woman who my brother used to hide from (or pretend he was asleep) when she arrived for lesson time. Perhaps she was a classically trained piano player, or even just a wonderfully skilled musician. I don't know, but I do know she wasn't really a kid person. Each time my fingers made a misstep on the keys, I automatically yelped, "Oopsie!" And while I am fairly good at reading music and plunking out a tune, once she turned the metronome on and sat back to watch and listen (to see how well I had (or had not) practiced), I inevitably misstepped again and again. "Oopsie! Oopsie!" Man, it pissed her off.

Today was complementary medicine day: morning acupuncture and afternoon massage. I was updating my acupuncturist on the past few weeks when I realized that of the past few blog posts, I had kinda forgotten to mention something big.

Oopsie.

We got some really good news when visiting the doctor's office on Day 8. The PET Scan results were printed out for us to see (and keep and frame) how major a change had been detected after the first two rounds of chemo.

From the report, "IMPRESSION: SIGNIFICANT REDUCTION IN EXTENT AND INTENSITY OF HYPERMETABOLIC ACTIVITY IN LARGE ANTERIOR MEDIASTINAL LYMPHOMA."

Although Dr. Henry had explained about the slight reduction in size of the tumor (as evidenced by the CAT scan), he had skimmed over the really good stuff from the PET scan results. Even the nurses were impressed that we were making such bigtime progress, after only 2 rounds of chemo (only!?). Basically what this all means is that despite the tumor still being rather large and present, the cancerous activity within it has decreased.

The white m&m's are winning the war! It has been reassuring - especially with all of the fun new additions to the side effect family - to remember that all of the heavy drugs are doing their jobs and working. And even though I know there will be plenty of "scanxiety" in the long term future, since this will be following me around for years to come, part of me is looking forward to more good scans in the nearer future, probably to be completed after the next round or two of chemo.

Out with you, cancer, you've had your day, and now you can be on your way. Don't let the door hit ya.

xxoo

Thursday, August 5, 2010

R is for Reactive



It's dinnertime at the Blitstein house and I'm finally feeling better. Sigh.

The past few days have dealt a few new cards our way because of course, we wouldn't want things to get dull around here. The first fairly new arrival is my acid reflux! Rockin. My very own case of GERD arrived on Day 8. The nurses at the doctor's office noticed my belching and we had a long talk (yes, they lectured me) about taking better care of my bowels, and about how all the anti-nausea meds in the world weren't going to make the acid go away. So. Add a little sour stomach to the mix and it's just lovely. I starting taking an acid reducer yesterday for that. Hopefully it will take effect one of these days.

Then we had a bit of a Prednisone issue that was causing difficulty swallowing yesterday and this morning. Prednisone is the P in R-CHOP, so it is an essential drug in my treatment. I get it through IV on Day 1 and then I take it in a high dose orally (in case you forgot about the yuckiest tasting pill EVER from a few posts ago) for Days 2-5. Unfortunately, it appears I tend to respond negatively (for a change) to the drop off after Day 5 with some additional nausea and then some swelling (of the tumor) which affects my swallowing. The solution to this is a more gradual decrease of the Prednisone dose after Day 5 = a double edged sword. It helps with the swallowing, obviously, but does a number on my already misbehaving stomach. Each day that I'm still on the pukey P, my tummy rewards me with additional discomfort.

For some reason, it has seemed like an especially long 10 days. Some nights, the sleeping pill doesn't do a good enough job of knocking me out and so I resort to reading depressing things (in print and online!) and eventually plugging into my guided imagery to soothe me to sleep. Bright and early (seven-oh-oh), the light of my life comes charging into my bed requesting a yogurt shake and an hour of On Demand Sesame Street. So although I'm resting a-plenty, I'm probably not getting as much actual sleep as would improve my overall health.

No complaints on the Judah front, though. His snuggles are the best in the world (sorry, Dan) and I would suggest that the SU2C scientists try to find a way to bottle his laughter so others could also benefit from its magical effects, but I can't afford to let him go, even for a moment. We are planning to take him to stay at a very gracious friends' house in Bethany Beach (or as he calls it, "Bethany's Beach") next week, which means lots of my favorite DB's french fries (screw the acid reflux) and soft serve and breezy ocean air for us all.

Upon our return, Judah will have a renal scan to check up on his kidney function (he was born with a mild condition - hydronephrosis - which is monitored yearly by his pediatric urologist). He is blissfully unaware of the pending trip to St. Christopher's, however, I am certainly not looking forward to it (although I will not be going with him to the procedure due to risk of infection) as it includes sedation and IV. We have promised him a trip to Sesame Place when we get back from the beach, the day before my next treatment, and he is ecstatic to meet all of his monsters in person. Yes, posted photos are guaranteed.

The only other ongoing major issue is, oh yes, our kitchen. For anyone who has visited Chez Blitstein, you are familiar with the fluorescent blue situation. For the rest of you, I am posting a before picture (just from one angle - it's a small kitchen). The kitchen is the last room of our house that remains untouched by fresh paint and/or contractor hands. Aside from the appliances, which were almost new when we bought the house 4 years ago, the rest of the kitchen needs to be replaced. Our faithful carpenter, Terry, will be working with us crazies to make it into a room we can a) actually put stuff away in, b) cook in, c) enjoy looking at, and d) sell for more money.

Generally speaking, I am not an indecisive person. I know what I want and I want it now (oh yeah, I'm also not a patient person - yes, you all have permission to laugh). So me being stuck in the house AND trying to re-do the kitchen exactly the way I want it has been a bit frustrating. Just ask Dan. Sadly, I was not able to make it out to Home Depot to check out cabinets, but their overall incompetence has taken them out of the runnings for our business anyway. I have a lot to say about our kitchen remodel, so for any of you out there on cancer overload (like I am), hopefully this will be a welcome diversion.

Finally, another big thank you for all of the endless dinners, surprise care packages, cards in the mail, encouraging comments and positive thoughts. Aside from the immediate members of Team Mama Mia, who are nothing short of relentless in their 24/7 dedication, these are the meaningful reminders that I am not alone.

xxoo

Wednesday, August 4, 2010

The Letters


Dear Day 7,

We have a lot to discuss. I know by now it is inevitable that you must come, as no one has (yet) figured out a way to fast forward through time (although that movie Click does present some interesting ideas).

But must you be so awful every time you come around? I'm warning you, the next round will be different. We have established a plan to thwart you (as my mother says) with IV fluids and a softer landing from the high dose drop-off of prednisone on Day 6, who has still been a fair-weather friend to me thus far. You, Day 7, do not deserve to have the number 7 attached to your name (after all, Judah was born on the 7th of May).

Let me be blunt here: you suck. By the time I get to you, I am already tired of being tired and sick of feeling sick. But you really put the icing on the cake with your fever and then sweating and then fever (and then sweating). I like to laugh, you know, and smile, and go outside and enjoy my life. You make it seem like 24 hours can go on forever. Please stop.

Mia

Dear Day 8,

While I appreciate your attempts to mop up the mess Day 7 repeatedly leaves behind, I do not believe you are working to your full potential. Yes, there is poison still coursing through my veins and yes, I realize my body is working overtime to distinguish between the good, healthy cells and the evil, cancerous ones, but you are supposed to be the sun rising on the new day. You are supposed to be the I-feel-so-much-better-today day.

Instead, you fail me. You are just a small improvement (and if I'm letting it all hang out here, you were no improvement yesterday) over Day 7 (ouch! I know that one hurt, but I'm not sorry to say it). You kept my head glued to my pillow (even in the car to and from the doctor's office as well as all through my IV drips). You brought acid reflux and belching and gas and tummy aches. It's all just a-gurgling on you, Day 8. You've got some work to do.

Mia

Dear Day 9,

Alright, now you have something I can work with. No, you have not improved the belly situation, but you have brought me back some energy I can at least pee in the toilet with (as opposed to the convenient but humiliating commode of Day 8). You're the cheerleader I've been waiting for (We've got ru'ach yes we do, we've got ru'ach how 'bout you?? YAAAAYY Mia!!*). Now at least I can voice all of my annoyances instead of letting them mull around in my hairless head. Okay, okay, Day 8 got to count the hairs (all 15 of them), but you - you lucky duck - you get to wash them!

Day 9, you have brought with you more than just energy. You brought the UPS man, the one who is always happy to see me (of course, I am always happy to see him too, wink, wink). And he brought me something I didn't even order for myself! You were really thinking this time. You also brought back what seems to be my appetite (although it's been so long, I shouldn't jump to conclusions).

But the best thing about you, Day 9, is that you brought Dr. Henry back from vacation (insert beam of light and church choir, "AAHHHH"), so I will always hold a special place in my heart for you. I'm assuming (read: praying) Days 10 and 11 will have me eating and digesting better, so I can't give you a gold medal just yet, but you are up there on the short list. I thank you for that.

Now, if you'll just give me enough energy to go to Home Depot (do they have motor scooters there?) and pick out the new kitchen cabinets, I will (mostly) stop yelling at Dan and threatening to fire my mother (not really, it was her idea - mine was just to get her hearing checked - but you knew that anyway).

Thanks so much,

Mia

*Ru'ach is Hebrew for SPIRIT!

NOTE TO PHARMACEUTICAL COMPANIES: If any of you care to actually pay for all of the free advertising, all donations will go towards: a new flatscreen tv, my soon-to-be remodeled kitchen, a trip to Hawaii (or Paris, or Fiji, I'm not picky) and professional-like copies of my dummy books to be sent to literary agents around the country.