Inspiration, Shminspiration

As we are now in the thick of Round 3 (DING!), Day 5, and approaching the dreaded Day 7 drama, I thought it would be an appropriate time to tell it like it is. Many people have emailed and snail mailed me such encouraging words that have helped me feel brave and capable of getting through this long stretch of road. And many people have used the word "inspiration" to describe me, which I feel is quite a fallacy. So I am here to set the record straight.

There is a lot of nausea. Moving my body sucks (especially my head from side to side). Constipation rocks (although it's not a whole lot different from my life B.C. - before cancer). Sometimes I'm too tired to answer a question using words and must resort to sign language. And of course, for those of you who wouldn't have already suspected this, plenty of tears. I have requested a fast forward button and a new tummy on a daily basis. I miss being normal. I want to want to eat healthy foods, but I must often resort to pickles (see side photo of when Dan redeemed himself from the vlasic fiasco - they must be claussen spears) and lemon drops. I try to utilize my sense of humor when at all possible, but it becomes difficult when my body should be eating and drinking and even water tastes bad. Remember how "edgy" I can get when hungry?

I'm not complaining, exactly. I know it could be worse. There are many people in the world for whom treatment is not an option. In the grand scheme of things, this chemo will end and I will hopefully go back to some kind of normal life (stay tuned for that blog - HA!). My appetite will return and I will open that juicer and give liquid kale my best try.

However. This really sucks. I have posted pictures here of smiling faces and happy playdoh lambs, but reserved the angry, pissed off pictures for my iphone. And believe me, there are plenty of those (also some ugly ones of my biopsy scars from the beginning when I was feeling like Frankenstein). There are lots of times when my mind wanders and bounces back and forth between what my future looks like and why I felt so blindsided by this whole experience. And yes, there's always, "WHY ME?" What did I eat? Breathe? Touch? Do in a former life to deserve this?

So, yes this week is tough. I'm getting through it with you guys and all of your amazing pick-me-ups. Snuggling with Judah. Working on my children's book (the pickins are slim for kids who have parents with cancer, let me tell you). My crazy supportive family, catering to my any and every culinary whim, requests for back tickles or even refraint from watching baseball in front of me (thank you, Daddy).
Believe it or not, chicken parm sandwiches (ask my dad for a funny story about conducting an impromptu taste test in the Glenside area) and yes, more freaking Taco Bell have been consumed in my very recent past.

Hence, I'm not so sure about "inspiration". But I do wholeheartedly appreciate the vote of confidence.

Tired Pill Tirade

This post comes to you straight from my bed. I have been stationed here since yesterday afternoon, when I arrived home from chemo. Since rounds 1 and 2 went "well" (so they say), the nurses were able to administer my meds faster this round. On the plus side, I don't have to hang out in the slightly uncomfortable chair at the clinic for as long. On the minus side, the high speed definitely slammed my hyper-sensitive body with something fierce. After all meds were in and I was de-accessed from my port, I came home and pretty much passed out. I was able to eat some meat and vegetables for dinner, thanks to eMend, which reduces (but sadly, does not eliminate) my nausea. I get to take it again tomorrow, and then I'm back to Zofran, Ativan and sniffing lemon essential oil.

I spent some time chatting with Dr. Henry (my lovable oncologist pictured with me, making my publicly bald debut, above) about the results of my CT/PET scans on Friday. Although the size of the tumor has not changed substantially, he explained that we are making progress. The way the mass breaks apart is akin to peeling the layers off of an onion. So we can expect it to keep getting smaller as the layers dissolve. Dr. Henry also explained my repeated Day 7 drama as connected to the tumor dying. As my body recognizes the cells that don't belong there, it tries to fight them off with fever (even though there has been no connected infection thus far). I enjoy greatly the term "death of the tumor" syndrome, as he put it. The tumor will continue to shrink but this particular lymph node will never go back to normal size (1.5 cm or thereabouts) due to just how large it (recently) grew to be. It will always be a shadow (but without cancer cells when all is said and done) in my mediastinal area (just wanted to use a fancy word there). Dr. says 3 more rounds of chemo are in order and while the possibility of radiation therapy is still on the table, he did not feel it necessary to discuss a plan for it yet.

Today begins the first of 4 days of Prednisone, so I'll start my tirade here. Why, oh, why must they make it taste so bad? It requires a chaser (organic cool whip and strawberries ain't so bad) and still it makes me gag and shudder. This is definitely the worst tasting pill I've ever had to take. PLUS it adds to my nausea, and is best taken with the food I so desperately don't want to eat. So many other pharmaceutical companies coat their pills in some kind of sugar or sweetener to ease the pain of downing one after another. Why not you, Prednisone?

My other complaint in the Department of Pill Swallowing is the size of some of these bad boys. Take, for example, potassium supplements. I had to take these during my Round 1 hospital stay. To describe them as horse pills is an understatement. They are so enormous that the first nurse broke them into halves for me (I was supposed to take 2 wholes and could only do 1 1/2 - I firmly refused to swallow the last 1/2). The second nurse suggested we let the pills dissolve into water and then just chug it. Sounds delish, right? The problem is that the white, sand-like granules are so heavy, they just sink directly to the bottom of the cup. You can stir and mix all you want, but the second you stop to tip the solution into your mouth, most of the pill is left at the bottom, forcing you to add more water and attempt it again and again until you've swallowed your fair share of straight-up potassium. And dude, let me tell you, it is nasty.

Maybe some people are good at swallowing pills. My mother-in-law swallows a whole handful of vitamins at one time. I have never had that kind of ability, but I was at least less afraid to swallow before I was having breathing problems (due to the mass growing near all of my breathing and swallowing parts). Now there's a small panic that occurs before each pill is placed at the back of my throat, praying it goes down smoothly. Each day I take my Colace (gel pill) or eMend capsule (which still seems oversized) or tiny little Ativan, I am thankful that someone out there in pharmacy land was thinking of my very own (panicky) swallowing parts.

xxoo

PS. This Playdoh lamby has nothing to do with anything written above. He was created during a pre-dinner session with Judah a few days ago. I was just really proud of my lamb (plus Judah is pretty cute too) and felt like showing off my Playdoh skills.

Card Carrying Club Member

Now I'm a member of 2 elite clubs: of course, the cancer/chemo club as well as the struggle-with-fertility club (I loathe the word infertility). It's difficult to be in both at the same time because many people think that one trumps the other.

Having cancer doesn't make it any less difficult to not be pregnant or to have had all the babies I've dreamed of. This doesn't mean I am not happy for people who are celebrating births around me, and I certainly don't want to make any of my expectant friends uncomfortable by writing this. But it's bittersweet for me. It does make it hard to see pregnant stranger after pregnant stranger (don't forget all of the pregnant doctors and nurses who have treated me in the past 2 months). It makes it hard to hear stories of friends of friends who are pregnant with their second and third children. It seems like I have been a magnet for other people's success stories. Even my mother has witnessed it, after telling me I was imagining it because it was on my mind so much, a man in Panera came up to us to tell me he had a child the same age as Judah and guess what? His wife just had twins, too! Isn't that wonderful? Oh yes, just dreamy. The only other people who can identify with this kind of hurt are those who have already suffered through it, much like cancer.

Believe it or not, there are even cancer survivors who tell inappropriate tales ("You have NHL? My friend had NHL as a teenager and then, can you believe she was later diagnosed with breast cancer?"). I'm not really interested in hearing any of these types of stories. The stories I want to hear are short and sweet. They are about women who are exactly like me, surviving chemo and cancer (with toddler in tow also avoiding lifelong scarring) and retaining their fertility, going on to have more healthy children and living long, healthy lives. I want to know that lots of them are out there and that I am going to soon be a member of that club.

It's especially difficult to deal with my fertility issues when I am in my 3rd week of treatment. I feel better - no itching or breathing problems, I'm driving again and socializing even. I'm just bald and my neck hurts when in different positions due to the port catheter that meets up with a major vein on my collar bone. My point is, I don't always feel like I'm in the cancer club, which can (in my case) be a major emotional setback. My first priority, obviously, is to heal from this lymphoma before even thinking about conceiving again. However, it's not that simple. I spent a year and a half trying to get pregnant already. Many a tear did fall long before my doctor informed me there was a mass in my chest. My (our) longing for another child did not disappear just because I was diagnosed with cancer. And now, I've found it returns with a vengeance when I'm feeling well enough to feel like myself.

I never used support groups (although I did see a therapist, don't worry) because I never wanted to hear stories that were worse than mine (this is the primary reason to stay away from google when dealing with medical ailments - diagnosed or unexplained). You can never un-hear them or un-read them. These horror stories stick with you forever and tend to overshadow (for me, at least) all of the hopeful ones.

My point is, especially for all of you lucky people who are members of none of these clubs, be careful what stories you share with us card carriers. I know (most) people mean well, but you know what they say about the road to hell and good intentions...

Someone asked me a while back to write about how I feel blogging has added to my healing process. I would have to say it's been a major creative and emotional outlet for me. It started out as a way for me to update people and keep everyone in the medical loop and I did not foresee people other than my close friends and family tuning in. I'm thrilled that so many people passed it on and are sharing it with others. I've reconnected with so many incredible people from my past who I had lost touch with because of it (and facebook, of course). And I am so grateful for the constant flow of concern and support. My blog has become an easy way for me to both guide others as well as to personally vent (albeit, quite publicly) and let go of many of the issues that clog up my positive attitude.

xxoo

Sigh of Relief

After all of Friday's worrying, my wonderful oncologist called around 9 pm on Friday night to tell me that for all of these side effects, the chemo is working! He saw my scans and the radiologist's reports and said that I look "much better"! We will know more on Tuesday at my appointment prior to chemo (blech). I was so relieved to hear that the treatment is actually effective and that all of this nausea and baldness is not for nothing. I was also so happy that Dr. Henry called me himself to tell me the good news (I don't work in the medical field, but I would say 9 pm is definitely considered "after hours"). He is the best and I feel so lucky that he's my doctor.

I've been very busy this weekend, swimming again and mall-hopping (Willow Grove on Saturday, and Montgomery today). Dan and I even had a date! We went out for dinner like normal people on a Saturday night and I ate a full meal at Effie's (love that Greek food). We tried for a movie, but it was sold out, so we rented a few DVDs and headed home.

I am definitely dreading Tuesday's treatment and trying not to think about how I'll feel a few days from now. It's certainly helpful to know that the medicine is working - it makes it a bit easier to swallow (literally and figuratively), knowing I will feel totally better eventually and this will all be behind me. For today, I am feeling mostly normal (except for the whole hair loss thing) and able to eat vegetables and shop - in person - with the best of them.

Speaking of shopping, I've been asked recently about some changes we've made in our house (and in my make-up bag). We threw out (almost) all of our plastic storage containers and replaced them with glass, mostly pyrex and some brand called martinex. I bought stainless steel snack containers for Judah's lunches and all of his cups are either stainless steel (Sigg is a good brand found at Whole Foods) or bpa-free plastic (his favorites are munchkin and nalgene). I don't know if any of it makes a bit of difference, but I do know that the cancer rates were not so high before everything was packaged and stored in plastic containers. So not only does it feel healthier, it feels olden days-ish.

As for my make-up collection, for those of you who don't know me intimately enough to know my penchant for product, I will tell you I have never been able to keep up with my love for good stuff. Lotions, hair goo, shampoos, body wash, face creams, pimple creams, blush, eye shadow, concealer, the list goes on and on (and on). I have been known to stockpile. Like I've said before, I like to be prepared (and I also like to have options). Now, I come to find out most of what I'd been using contains tons of toxins that I have been absorbing through my skin for years. So to say I've scaled back would be an understatement. I'm using NOTHING that contains parabens or phthalates (including my daily dose of eye glitter) and I finally found a healthy deodorant (aluminum-free) that works (it's by Lavanila and called: the healthy deodorant - vanilla grapefruit scent)!

Of course we have been eating mainly organic fruits and vegetables (at least the dirty dozen: Peaches, Apples, Sweet Bell Peppers, Celery, Nectarines, Strawberries, Cherries, Pears, Grapes (Imported), Spinach, Lettuce, Potatoes). Much to Dan's dismay, it is more expensive to eat this way, as I also insist that whatever dairy, egg and meat products are purchased are also organic.
It's amazing to think about the amounts of crap that go into everything we ingest. I don't want to go overboard, but it's difficult not to think that all of these environmental factors had something to do with my cancerous state. When I was pregnant with Judah, I used to hold my breath when I walked by a smoker or when I was driving behind a truck giving off big, black exhaust. I wanted to protect him from this environmental garbage before he was even born, and here I was, lotioning and lathering, eating and drinking without a care in the world.

So slowly, slowly, we are changing the way we, in our one little house, take care of ourselves. Hopefully it will become easier (read: cheaper) to do this because everyone else will try to do the same.

xxoo

Photo info: fresh bounty from my friend Alison's garden - even better than Whole Foods!

For more information about what fruits and veggies are best bought organic, see:
http://www.organic.org/articles/showarticle/article-214

A Snarky Start to the Day

This morning I went to see my good friends at Radiology for CAT and PET scans (next week I'm having DOG and HAMSTER scans). Luckily they were the first appointments of the day, so I did not have to fast for too long. When I am hungry (with or without cancer), I tend to get a bit edgy, so add anxious and nervous to the list and I was in rare form this morning: screaming at bad drivers on the road (I wasn't actually the one driving) and threatening to take off my bandana to give a smoker on the sidewalk an idea of what was in store for her. Plus it was smelly in Center City and people everywhere were grossing me out and pissing me off. So much for my positive attitude.

Anyway, the scans weren't too bad. The only drama was when the nurse (not my usual favorite one) was accessing my port and couldn't get the needle in. She keep jabbing me with no success, so she finally (after making me cry!) turned me over to someone else who chose a smaller needle and had no trouble at all. I thought the port was supposed to eliminate exactly that type of issue?!? After that, I could just lay back and relax while the radioactive glucose and contrast dye did their jobs. Luckily, I did not have to drink the barium, since I told them I have chronic nausea and it would be a waste as a puddle on the floor. They gave me 2 cups of water to drink instead. I wasn't uncomfortable, but I will say I did feel weird. When the tech injected me with the contrast dye, he reminded me of the warm feeling I might get all over my body. I did not get it everywhere, but mainly in my nose and yes, "down there". So odd. I requested that the tech take my picture before the scan so that Judah could see what I mean when I tell him they send me through a big donut to take pictures of my insides. He was surprised, but willing (as evidenced by the photo above).

Now, we wait for results. I probably won't know anything until Tuesday, when I have my next appointment with Dr. Henry and then chemo again (Round 3 - DING!). It is agonizing waiting for these things. Your whole life - and future life - runs through your mind on a loop whenever you're not distracted enough. Is the chemo working? Did the tumor shrink? How much more of this to I have to endure? And then there's the dreaded question: has it spread? That thought hadn't even entered my mind until last night when I read about a friend whose cancer spread to her bones during treatment. Then I was officially terrified and had a minor meltdown, until Dan reminded me that there are good signs already that the treatment is working. My itching is gone (finally!) and the venous pattern on my chest has shown improvement since the beginning of treatment. Also, the swelling I had in my chest (whereabouts the grapefruit had set up camp) has gone down significantly. Hence, I should have positive feelings about the scan results and I am trying my darndest to not let my fears get the best of me. After all, I read somewhere (chemo brain prevents me from crediting the appropriate author) something along the lines of: don't give the universe any ideas...

This has been an eventful past few days. Since my energy level has increased, I've been able to do fun things like:
- drive a car again (it had been about 7 weeks)
- start to catch up on thank you note writing (if you haven't received one yet, don't worry, it's coming)
- finally keep an appointment for family counseling (for confidentiality reasons, I am not permitted to make side comments on this one)
- shop at Marshall's (we all love a good bargain, especially Dan)
- attend the Look Good...Feel Better make-up workshop (although 80% of the make up contains parabens or phlalates and is thus unusable)
- go swimming (Schwartz's - you ROCK!), and more.

I have been so busy, I have barely had time to facebook! So we consider that an improvement from Bed-ridden Days 7, 8 and 9. I truly appreciate all of the outstanding support from Team Mama Mia. Every day I continue to receive sweet messages, emails, lovingly made meals, and thoughtful cards and treats in the mail - I think that aside from my wedding day, I have never felt so loved and cared for in my life. So a big muchas gracias to all of you team members who have kept me (and the rest of the clan) in your thoughts and prayers, and have made me feel so appreciated and valued. You are all cordially invited to the huge dancefest we will host when this whole ordeal is behind us, so we can thank you in person.

xxoo

Analogies

Well, just one, really. Since my whole treatment (R-CHOP, for any of you needing a re-cap) started and the chronic nausea kicked in, I've been thinking this is a lot like my first trimester of pregnancy. The first big ticket similarity is obviously the nausea. I know some of you moms out there were lucky enough to get through without it, but I was not a member of that elite club. Morning sickness? Try all-day, green-in-the-face-when-you-get-to-work, eat-secret-stomach-filling-snacks-so-your-third-graders-don't-catch-you-munching-during-class, easier-than-joining-weight-watchers sickness. No fun. This is much the same. The food commercials are absolutely disgusting (why so many with cheese sauce??), and I am sorry, but watching other people eat (specifically the adult males who frequently eat meals in my house) is also nauseating. Especially when they grunt and bite simultaneously. Ew.

Then there's fatigue. During pregnancy, I used to pass out on the couch every afternoon around 4, wake up a few hours later and try to stomach something, then go back to sleep until my husband dragged me upstairs against my will around 10 and my alarm went off the next morning at 6. Chemo fatigue is slightly different in that many mornings I can't imagine myself getting out of bed to get dressed, let alone go to work. It still boggles my mind that there are people going through this who work during treatment. Like, for a job. How is that possible? Aside from the high risk of infection (kids are germ-fests), I only drove a car yesterday for the first time in months! How would I even get to work if I could lift my head off the pillow? Couple that with lesson plans, field trips, report card conferences, and oh yeah, 34 kids to manage every day (not to mention teach...) and I'm exhausted just thinking about it.

Next on the list is heightened sense of smell. Apparently the rest of the people in the house are not able to catch the same aromas (read: stenches) as I. I can smell food (of course), smoke (do not get me started on people who are still voluntarily and KNOWINGLY inviting cancer into their bodies), grass through the air conditioner, and much to my dismay, myself, to a much more revolting degree than they. When I was pregnant with Judah I had to retreat to the bedroom with open windows and ceiling fan on high, as well as my face under the sheets to try to escape the smell of whatever was cooking in the kitchen. The good news about my sense of smell is that I do find comfort in the smells of lemon and peppermint essential oils. If I could only find a way to permanently adhere the little glass bottles to the insides of my nasal cavities, life would be most excellent.

Then there are the cravings. Since most of the people reading this already love me, I am going to be truthful here. Yes, I like Taco Bell. During my first trimester, I used to stop at the Taco Bell on Roosevelt Boulevard on my way home almost every day. Dan would find smelly taco wrappers in the car and know my dirty deed, only too late. I am still aghast at myself that I crave the soft tacos yet again! EWWW! Who knows what's in that meat? And who touched it? And what did they touch before it? I gross myself out for wanting it. But there it is. Out in the open for all to read. Yesterday, thank goodness, it was something a bit more trustworthy: Primo's chicken parm sandwich. Half for lunch and the rest (almost) for dinner. It's funny how something that tastes so good at 1 o'clock, doesn't neccesarily do it for me at 6. For the rest of my diet, during the low points, it must include pickles (ahem, claussen kosher spears only, please), soft pretzels, macaroni (no cheese), eggs (prepared over medium and by my mother) and potato chips. Sounds like a perfectly healthy cancer diet, right?

My question to Kris Carr (and all other crazy sexy cancer survivors) is how can I possibly drink kale juice when I'm so nauseous I can't drink water? It's difficult to feel healthy when you are seriously limited to what you can physically keep down. I admit, I even ate a bag of nacho cheese doritos during my last chemo treatment while having a consultation with the nutritionist (and I gave up dairy in February! HA!). No, I would not nominate myself as the poster child for healthy cancer diet at the moment. Just trying to get to the other side of this treatment without being completely malnourished. Because the biggest difference between pregnancy and chemo side effects is that at the end of R-CHOP, there's no baby. The reward is that I'm still here.

xxoo

How Is The Kid?

Many of you have asked how Judah is holding up through this ridiculousness. This morning, Judah woke up, walked into my bedroom and his first words were, "Hi Moms!" He wakes up every morning happy and once he starts talking, he does not stop. We have created a monster. He is doing better with camp (initially there was a LOT of crying involved), where he goes three mornings a week, and continues to be a precocious, delightful, and imaginative child. He often regales us with stories of his adventures in Africa (with his little sister) or England, or when he was in college for 10 weeks learning to play a variety of instruments (including but not limited to: the flute, cello, bass, trombone, violin, tambourine and sticks). Today, Dan and Judah opened up the slip-n-slide Judah got for his birthday back in May and had a blast on the front lawn.

Judah has the most difficult time coping when I am stuck in bed (or on the couch) for days on end and I don't have the energy to do bedtime or bath or even join him at the dinner table. However, he and Dan have been able to develop a closer relationship because of this and if nothing else good can come from my illness, at least Dan doesn't feel so second fiddle.

Our little boy is full of good ideas. After dinner, he often suggests, "I got a good idea! Maybe, after dinner, we can go out for ice cream!" Or, "Maybe, after dinner, we can do the hokey pokey!" Or, on the topic of having the baby sister he so desires, "Maybe, we can go to the baby store."

Clearly, our plans for a second child have been put on hold. We had been working with a fertility specialist for the past year to help us figure out what was preventing pregnancy this time around when we had no problems just a few years ago. Yes, we spent the past year hyper-focused on fertility issues (including frequent doctor appointments, ultrasounds, bloodwork, etc.) only to direct our attention to seemingly all-consuming cancer.

My oncologist concedes that having a tumor the size of a grapefruit growing in my chest quite possibly could have been the cause of our otherwise "unexplained secondary infertility" and he has never had a patient with my diagnosis and treatment who had difficulty conceiving a child afterwards (WAHOO!). My acupuncturist, masseuse (and I'm guessing my chiropractor, were he in on all of this) all agree with him. Makes sense to me. If one part of my system is off, how can the rest perform business as usual? Even though my fertility doctor isn't so convinced, we chose not to freeze embryos prior to starting chemo. I did not want to put off treatment, or really add any more hormones to the mix - have I mentioned how sensitive I am?

Hopefully, when all of this poison has run its course, and the grapefruit (hopefully at least a lemon or lime by now) is squashed into oblivion, we will go back to trying to conceive naturally. We'll have to cross that bridge when we come to it, and if it means we have to go abroad to bring home a sibling for Judah, so be it. For now, he is pretty content being everyone's constant focus of attention.

xxoo

People Will Stare

Got out of the house today! I'd been fantasizing about going to Target for 2 days now and this morning, my dream became a reality. I prepared Judah for the wig-wearing and asked him his preference (apparently he likes the blonde bob) before I got dressed. Dan took him to the pool so my mom could accompany me to Tar-jay in peace (retail therapy requires focus). I grabbed my wristlet (I'm so stylish even though I'm not allowed to carry more than 10 lbs.), water, and sunglasses and we were out.

Now. I am honestly telling you I left the house thinking I was looking somewhat normal (except for the brownish bruise snaking up the right side of my chest where the catheter connects the port to my vein). I was thinking that the wig vs. scarf/hat (screams cancer patient) vs. shaved head dilemma would be best solved by just going with the wig. Really, we humans do look more, say, regular, with hair. We're just so used to seeing most people with it (especially ourselves), that when it's gone, it's difficult not to do a double-take. So with wig, sunglasses, pink sundress and even my sparkly wedding rings on, I am feeling "normal".

We get to Target and I am all about the motorized-seated-scooter-cart. We unplug it from its charger and we are on our way. I am trying not to mow people down as I get the hang of driving it (I am even chuckling to myself as I type this the memory is just so ridiculous). Shopping is grand! Why did I not do this before?? No walking? No standing? Just reach or even point, and objects can appear in my cart (c/o my overworked and underpaid mother)! We love this, throwing leggings and yes, more sundresses into the basket.

Eventually, the wig feels tight and slightly itchy. I start to slide it around on my head, attempting to relieve the discomfort. I even ask my mom, "What if I just took this off now?"

"You can do whatever you want," she replies.

"But people will stare if I take it off," I counter.

We burst out laughing. Yeah, people will stare. Are people not staring now? (Let me answer that for you. Yes, people were definitely staring.) I am still laughing at the thought of this moment. Never in my wildest dreams did I think I would be in this position, on this scooter, in this store, skinny (HA!!) and weak (physically speaking) and battling cancer. Deep breath, head shake.

We made it out spending less than $100, which is always considered successful, and without causing any major scenes. Did come close at checkout when the cashier tried to turn her light off as we were getting into her line. They do not make the checkout aisles big enough for the reverse scooter maneuver, so I chose to stay put. The wig remained on until we got into the car, when I realized 1 hour is probably a good chunk of time to consider keeping it on my head (for future planning).

Thank you for sticking with me as I battle through not just cancer, but little bits of everyday business that feel like monumental undertakings. I was out and about (not at the doctor's office getting labs checked) and loving it.

Looking ahead, I have a CT/PET scan scheduled for Friday, July 23 (first appt. of the day!) to get a look at our progress. My energy level is slowly a-rising, so the posts they will keep a-coming.

xxoo

Upswing

Today is Day 10! Hallelujah, we are in the double digits of this treatment cycle. This is, however, a double-edged sword in that the higher the numbers get, the better I feel, but the closer we are to the next round. Ugh. So Day 7 - not a good day. It seems that (although this round was slightly less dramatic than the first) along with Day 7 comes fever, bone aches (from the Neulasta - will explain in a moment), headache, nausea (even unaffected by IV Zofran!) and general crappiness. What I have learned from this is that a good dose of a sleeping pill (I am trying not to publicly endorse too many drugs) will at least help move time along a bit faster.

Neulasta is the injection I get 24 hours after chemo to try to prevent a sharp drop in my white cell count a week later. It works with my bone marrow (which produces white cells, right?), so one of the terrific side effects is that my bones ache, most powerfully on Day 7, requiring some good painkillers.

I went in to the doctor's office on Wednesday (Day 7) to have my blood tested and cells counted (let's hear it for the port...) and although my white cells were low, they were not as low as last time and my "absolute" numbers (from what I understand these are the white cells in the making - still unborn) were good, although troubling since it took multiple attempts to actually get a reading on them. Still, they put me on IV antibiotics (2 different ones) and, yes, Zofran for a few hours to get me all protected against any harmful bacteria lurking in my blood and try to get rid of my extreme nausea.

I returned home, thank goodness, to settle down for an evening of hot and sweaty, feverish fun! At least they didn't make me go to the ER. I have to remember to be grateful for something every day (Kris Carr reminded me). With my parents and Dan by my side, we got through it. Day 8 was a few degrees better, but I still found it difficult to lift my head off the pillow. By Day 9, the stink was starting to set in... Fever off and on for a few days, plus no energy for a shower does not equal a Mia as fresh as the morning dew. However, my spirits were lifted when I got some fun t-shirts and treats in the mail (crazy sexy cancer goddess, I heart my oncologist), plus a delivery from old navy full of fun (and cheap) things I ordered prior to Day 7.

Now we are in the midst of Day 10 and yes, another heat wave here on the East Coast. I did indeed shower this morning and then spent a good chunk of time this morning out on the porch, chatting with neighbors and watching Judah draw with chalk. I was permitted to stop taking the antibiotics yesterday because they (along with EVERYTHING else I take) upset my stomach and it appears there is no actual need for them. So now I'm waiting for the nausea to take its hiatus until Round 3 so I can pack on some preparatory (and restorative) pounds.

Stay tuned for more regular posts as we near week 3 of the cycle and my energy level increases. Coming soon: pukey pill tirade, Judah update, the trouble with making plans, spending a LOT of quality time with family (without committing a crime), knowing about your disease without knowing too much (AKA forbidden to google), and finally, the question of how to show appreciation for a ridiculous amount of emotional (and culinary) support when everyone you've ever known has something to contribute to your healing process.

xxoo

Details, Details

Gross Alert: If you are squeamish, you may want to skim this post.

I am thrilled to announce that the two scabs on my feet have finally healed and fallen off!! Let me explain. I don't know if I wrote before about one of my NHL symptoms: major itching. It started a few months ago, under my armpits (I thought I had developed an allergy to my deodorant) and somewhat quickly spread to full body itching. I saw a dermatologist (along with my acupuncturist and massage therapist) who prescribed Allegra and everyone pretty much thought the itching was due to anxiety (fertility stress can do a number on the mind and body). I tried all kind of lotions, sesame oil, oatmeal baths... nothing helped.

Fast forward a few months to the beginning of my diagnosis process and I was still pretty itchy. When I say itchy, I mean, I imagined myself getting some relief from standing in a prickly car wash and being scrubbed from head to toe. What I really did (besides using hairbrushes and begging my husband for forceful back scratches) was rub the tops of my feet on Judah's carpet to try to satisfy the itch. What I didn't realize was that I was scratching so hard, I created blisters (perfectly placed at just the spot where that in-between-the-toe piece on my flip flops hits). That was over a month ago. I guess chemo makes everything heal a bit slower and I've been waiting and waiting for these gross scabs to heal.

Another joyous thing that happened today is I shaved my legs! This may not sound like the thrill of a lifetime for most people, but it feels post-worthy for me. With all of my hair loss, why isn't the leg hair gone? I shouldn't complain because I still have my eyebrows (for now) and losing them is something I'm fearing. For now, the Dansky eyebrows rule...

Recovering from Round 2

Just a quick note to keep you up to date. I am resting on my favorite couch spot (best TV sightline) and currently watching Thomas and Friends with Judah.

Today was a few degrees better than yesterday which was full of a generally crappy feeling. I did shower (hooray!), eat 3 meals (eggs, cinnamon toast crunch and even chicken and corn on the cob!) and snacks (watermelon, potato chips and soft pretzel), and I took my (yucky tasting) predinisone, as directed. So, I am eating, contrary to popular belief, mostly to try to get the disgusting taste out of my mouth (one of the side effects of my chemo drugs is taste disturbance).

On a side note, I want to send a big blanket THANK YOU to everyone who has sent packages, cards, supportive messages, and made and sent delicious DINNERS! We all appreciate you more than words could say. Not having been able to write individual thank you notes has been very difficult for me, as showing appreciation for others' kindnesses has always been important to me. Just know that the thank you's will come, just as soon as I can write them.

Keep voting on the wigs you like!

xxoo

Voting Glitch

Since the poll I tried to install wasn't working, I deleted it. Please comment below with your preffered wig...

Thanks!
xoxo

Wig Time

Please use these pictures to vote for your favorite look. Laura Z. was kind enough to send me a whole goodie box to play with. Judah thought they were too silly and made me take them off (I may have surprised him a bit when he woke up from his nap). I only wish I could've caught Dan's face on camera when he came home from the gym.

I thought I wouldn't want a wig unless it was pink or purple, but I have to admit, I sort of like having some hair around my face. It makes me feel semi-normal. Don't forget to vote!

Round 2, Day 2

Just a quick post to let you know how I'm doing today. Mostly just super tired and not too hungry. I take eMend (an anti-nausea 3 day med) which works well to prevent overwhelming nausea, but I don't have much of an appetite. I did have two eggs this morning and a slice of rye bread, plus I'm drinking as much water as I can tolerate to try to flush the poison out ASAP. Air conditioning is good, as is HGTV (even though I have seen the last 2 episodes of Income Property and First Time Design already). It's the best channel for me to watch, with minimal food and baby commercials. Plus, online shopping is good retail therapy. Thanks for all of the encouraging FB comments and cards and care packages. I am so lucky to have the best team surrounding me with love and support.
xxoo

caption for the photo: Hanging out at the Wellness Center

No Hair Day

So I did the Toilet Test with my hair. Fellow crazy sexy cancer survivor (and machatonim), Laura Z. told me to rub my head over the toilet for a few minutes to see if large amounts would fall out. Then I'd be ready for the buzzer. I took the test (and passed) and proceeded to go to the Hair Fairy's (Ilene's) house for a close shave. I was not drugged this time (big mistake) and there were definitely tears involved. The worst part is that because of the glue holding my skin together where the port was implanted, I'm not allowed to shower still, for fear of getting the glue wet. No biggie, it's only 102 degrees outside and I just shaved my head, so it's not like my skin would be sweaty and itchy at all.

We prepared Judah by talking about the Hair Fairy (he is still looking for her) and the special medicine that makes my hair fall out. We had read a kid book before about mommies who have to get special medicine and lose their hair (although now, whenever I ask him if he wants to read a book, his answer is, "Yes, but not a boo boo book."), so I reminded him about it. He liked my new 'do and enjoyed rubbing my head. After dinner, we tried on scarves together (we took turns) and he told me, "It's sooo fuzzy!" Thank goodness for Judah B.

xxoo

Post-Port

Just a quick post to let everyone know the port procedure went well and I am at home resting comfortably. I am including a picture of what a port-a-cath looks like (I have a single, fairly small one that my doctor said is silver and white - he laughed when I asked him what color it was), just so you have an idea of what is implanted in my upper chest (right hand side). There was minimal IV drama (only 3 attempts to get one in) and just the right amount of sedation.

The procedure was pretty fast, about 15 minutes long, and in no time I was back in my bed, eating a turkey sandwich and graham crackers. A percoset and a wheelchair ride later, I was on my way home.

Now I am gearing up for Thursday, Round 2 of chemo. I am hoping that what I've heard holds true for me - the first round is the worst and it will get progressively easier for my body to handle such toxic drugs. In the meantime, Judah is doing much better at camp (he actually went swimming today!) and we all have 102 degree heat to stay out of tomorrow. Stay cool.

xxoo

101 Degrees

The good news is that that is not my body temperature. The bad news is that's today's predicted high temperature in Philadelphia. Awesome. I'm waiting for my mom to pick me up and drive me to Pennsylvania Hospital, where I will have my very own port put in this morning. It's definitely a good thing for my veins (and anxiety level) and will hopefully eliminate anymore IV drama. So I'm trying not to be too nervous for it.

Now that I know what it's like to have an IR (interventional radiology) procedure where you are sedated, but not enough to be unaware of what they are doing to you, I know enough to be anxious beforehand. The first time I met my friends in IR, they did a CT guided biopsy on the mass in my chest. Basically this meant they placed (read: jabbed) a needle into my chest (8 times). And each time, the needle just stands there on its own while they slide you into the scan to make sure they have it in the right place. Plus my (sedated) arms had to be above my head, which was the exact opposite of where they wanted to be. Awesome.

I kept asking, "Can I put my arms down now?"
"No, not yet..." was the reply 7 times.

I distinctly remember the radiologist saying after the 8th time, "That's the money shot." Unfortunately, they were not able to show me the money as that biopsy was inconclusive for lack of a sufficient sample...

This morning should be different. They're not trying to get something out of me, but rather, get something into me. My biggest fear is that they won't be able to get an IV in me (since I had to get up and eat/drink at 5:00 am to try to hydrate my veins) and then how will they sedate me?? I'm hoping for a no-drama Tuesday.

Just as an FYI, Blogger (who runs this blog) is having problems with their comments feature. So if you are leaving comments, they are getting sent to me, but not appearing on the post. I am told this is being remedied, so you can continue to comment as you wish and someday soon, the words will magically appear on this site. :) Thank you to everyone for your positive thoughts, words and energy. I will post, if able, after the procedure.

xxoo

Ground Control

So maybe the worst part of this whole ordeal (besides fearing death and future infertility, blah blah blah) is the loss of control factor. I will be the first person to declare I am a certifiable Type A control freak. I am not a mean person (most of the time), I just like things the way I like them. I prefer the word "particular". When I was in college, I made a list of the 257 qualities I was looking for in a man, and then I actually found and married someone who fit at least 200 of them (if not more). I am not someone who settles for anything less than my own personal best (but not athletically speaking), especially when it comes to creating things with my hands or those gosh-darned PSSA test scores, which I enjoy taking credit for when they are good... Over the years, I have gotten better (right, Chris?) at prioritizing which things (at school) are worth managing (behavior) and which I can delegate (bulletin boards) without too much worry.

But with cancer, I have lost a large part of my sense of control. Not all, but more than I'd prefer to part with. It was gone the minute my doctor said there was a mass in my chest. I have this vivid memory of my mind going blank and just asking again and again, "What does that mean? I don't understand. What are you telling me?" And when one scan led to another, and one biopsy led to another, and I had to rely on the doctors at 2 separate pathology labs to give me some kind of results (3 weeks later), I realized that my ability to control this situation is limited to what I can do to handle my own stress and anxiety. How can I maximize my treatment? Or rather, how can I help myself survive this treatment? I often feel like I'm at the mercy of doctors and nurses and alternative therapists and all of the well-intentioned advice they have to offer me. The term "survivor" definitely has a whole new meaning to me now.

My poor husband is now the sole victim of my loss of power. I try to find my comfort zone again by, yes, nagging him, and asking questions and making requests (I do say please and thank you) that bring me some sense of calm. Of course, then he, as the naggee (is that a word?), is miserable right there with me and no one is happy.

Visualization does help. My guided imagery cds are now all loaded onto my iPhone for 24/7 usage and they have been life savers on more than one occasion. They give me the power to relax, which seems rather funny, seeing as how I've always needed my control for more active situations (um, ever been in charge of instructing and motivating 34 8-year-olds?). But now my life requires me to use my inner control freak as a focusing tool. It's almost like being in early labor for a really long time. There's a lot of deep breathing involved. And my happy place is under a lemon tree. To be honest, I don't exactly know what a lemon tree really looks like. It doesn't matter. I have this image of a beautifully fruitful lemon tree (lemons do NOT make me nauseous) standing in the middle of a grassy field that I try to conjure up everytime there's a stressful moment or some nasty KFC commercial is making me want to toss my cookies.

I try to be positive. I use eye glitter to try to maintain some outer sparkle when I'm not feeling very sparkly on the inside and the color purple (sundresses, toenail polish, etc.) cheers me up. The vision of next summer is reassuring - being on the other side of this bump in the road.

xxoo

PS. Happy Birthday Auntie Rae Rae! We love you and miss you!

Waiting for the Hair Fairy

So I was told that 3 weeks after my first treatment my hair would start to fall out. I thought I had a few more days, but this morning in the shower, I noticed lots of hairs on my hands when I rubbed water through my head. It's very strange, (I mean, this whole thing is VERY strange) losing my hair one strand at a time. I was afraid to dry my face too hard; maybe my eyebrows would fall out.

Let me back up and talk about my hair for a minute. I have often complained about having such thick hair. It takes forever to blow it dry or get a good haircut, it's big and fluffy on a good day and boy, oh boy, does it have a close, personal relationship with the Philadelphia humidity. There were many times I fantasized about shaving my head, especially when I was in the midst of a ponytail rut (if it's long enough to be pulled back, it will always be pulled back). Forget appearances, no hair would just be so much easier.

But that was when it was on my own terms. A few weeks ago, when I went into the hospital for my surgical biopsy, I looked up some information on preparing myself for chemo. What I read was mostly advice that said to cut your hair short so it's not so dramatic and traumatizing when it starts to fall out on your pillow or in the shower. I immediately called Sadie, my wonderful stylist, and broke the news to her. I saw her the day after the biopsy (thank goodness I was still on painkillers for that haircut), armed with a picture of Michelle Williams' pixie cut on my iPhone. Can I look like this? Well, apparently, with thinning shears and a razor blade, we can get awfully close. Surprisingly, there were no tears (again, I was drugged), and I left in shock, but happy that it was my choice to make this dramatic change. I even kind of like it. Still, when I catch glimpses of myself in the mirror, my hair is the most startling thing about what I see, like if I've forgotten about cancer for 30 seconds, my hair is there to remind me what's up.

And now, I am facing the loss of the little hair I do have. It flat out sucks. I thought in the beginning that it wouldn't be a big deal and it's just part of the whole package deal. It will grow back when all this is over (who knows what it will look like?) and I will move on with my life, sans scarves and hats. I can't get into the wig idea, unless it's sort of a Lady Gaga pink or purple situation. They just look too fake and uncomfortable (especially in this Philadelphia summer heat). It helps to think of all of the balding men out there who have no "end of treatment" to look forward to... If they can still be themselves with thinning or no hair, I can certainly handle a few months of bald.

The silver lining in all of this is no shaving or plucking or waxing for the next few months, right? I mean, less facial hair can't be a bad thing! Stay tuned for pictures of the first hair transformation, and as the hair fairy settles in, I will continue to post pictures of all the fancy scarves and hats (and hopefully a pink Lady Gaga wig) I will learn to live with. For now.

xxoo

First Try

I am not shy. I'm sort of a loud mouth, actually. So starting a blog seems logical for me during this time in my life, when I'd like to be keeping track of every little miserable and inspiring detail. The plan is to update all of the people who care about me (which I've discovered recently is a LOT) and to document all of this ridiculousness for others going through it or for some later book deal :).

I am a mother, first and foremost, and aside from my treatment and healing, my 3 year old is my top priority. Judah will be going back to camp on Tuesday, despite the fact that he is still waking up every morning at 6 am, crying ("I don't want to go to camp today...") and needing reassurance that Dan (my husband) and I are still here. After a slightly traumatizing hospital stay (for Judah and me) last weekend, he is not convinced I'll be here when he wakes up each morning. Who can blame him? He's fantastic and I could devote many an entry to just him and how he's coping with all of this craziness. The last time he asked me if the boo boo was still there inside my body, I explained to him that I have to go back for more special medicine that goes in through the needle in my arm. He replied, "Isn't that annoying?? That's so annoying!! I can't believe you have to get more medicine!" The good news is that he loves doctors and medicine and even watching people (including himself) get shots, so he's been very curiously watching me get my nightly Fragmin shot (a blood thinner for the clot I developed in my left arm). He feels like a part of this process when he can help with a job (like going to the pharmacy to get my medicine) or do me a favor (he likes to pride himself on doing "mitzvahs"). He constantly entertains us with guitar concerts and jokes and I am loving the age of three if for no other reason than because he has learned how to play by himself!!

The past month has been quite a roller coaster ride. From my first xray to a CAT scan to an inconclusive IR (interventional radiology) biopsy to a PET scan to a surgical biopsy (did you know they serve scrapple to patients in the ICU??) to a biopsy reaction that felt like I was giving birth through my shoulder (Dr. Percoset, I thank you, wherever and whoever you are) to an actual diagnosis, it's been rocky at times. Oh yeah, and then there was Round 1 of treatment (R-CHOP) and my super-sensitive body's response to it (that's for another post). **Bonus points to anyone who knows what neutropenic means.** Luckily, this week I was able to have a massage (Bridget is wonderful) and acupuncture (Pam brought some color back to my cheeks).

I am so fortunate Dan and I chose to live near my parents, without whom I don't know where we would be. They have been an incredible support for Dan and Judah and Mooshu (our beagle/coonhound) and I - both physically and emotionally. I know we have all been pushed to our limits, but I think, as a family, we have been coping amazingly well. My husband is also a teacher and so has been able to be home to bend to my every whim and follow my every (parental, cooking, cleaning) direction. So far, he hasn't "fluffed my pillows" if you know what I mean, so I give him big credit for dealing so well.

Looking ahead, I am scheduled to have a port (Port-a-Cath - Implantable Venous Access System, so I don't have to deal with anymore IV drama) put in this Tuesday, July 6, and then Round 2 of my R-CHOP treatment commences at 9 am on Thursday, July 8. I am looking forward to meeting Wayne, the masseuse who will give me a massage during my treatment on Thursday (we decided Thursdays were the best day to have treatment for the reason only that Wayne works that day). I am finally starting to feel like the "hit by a truck" feeling is lifting and then I have the next one to hit me all over again...

A quick shout out to everyone who has thrown love my way - including my family, high school friends, old family friends, work peeps, camp friends, college friends, post-college friends - it has come from every angle (even the lady sitting next to me at the nail drying station a few weeks ago said a prayer for me) and I couldn't feel more loved or appreciated at this time. My white cell count is up and normal (as of yesterday's labs) and that feels good, too. Thank you for the love and support. Keep visualizing (white m&m's kung fu fighting the tumor) for me and check my blog for updates. xxoo