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