Thursday, November 29, 2012

Good Words: Beginnings

Today after a wonderful visit from Maggie, I got to work. Soon my colleagues and I will file all of our documents for Wendy's case and prepare for her hearing before an immigration judge. Tonight, those documents need my attention, so I won't have time to write. Still, I wanted to post a quote fitting for Wendy's journey and, perhaps, also fitting for part of mine.

There will come a time when you believe everything is finished.  
That will be the beginning. 
-- Louis L'Amour

Wednesday, November 28, 2012

Problem Solvers

The phlebotomist came to draw by blood around 5am this morning and by nine, the fabulous PA-in-training, Lori, had leaked the news that my ANC had hit 490. I couldn't even believe it. I'm getting out, aren't I? I asked. Lori smiled and denied the certainty of it, but I could tell, the answer was Yes.

I still needed one more two-hour infusion of antibiotics but when that was done, they disassembled the hardware that had collected on my arm (see below) and I busted out of the Brigham like a caged animal.


Like most caged animals when they reach the wild, however, I was very apprehensive when I met reality, or in my case, the bustling main lobby of the Brigham. It was packed with people and all of the sudden people mean germs. And germs mean fevers and fevers mean hospitals and hospitals mean time away from my family. So while I had been desperately waiting for this moment to walk the halls without a mask, I found myself at the information desk asking for one.

Brian and I treated ourselves to a delicious lunch at Legal Seafood on the way home despite that I was still in my pajamas. Then I dropped him off at hockey practice and headed home for the first time since Friday. Once home, I (obviously) cleaned and unpacked to the tunes of my Kick Cancer's Ass playlist. An hour later, Brianne and I went to pick up the kids. On the ride there, I was as giddy as a kid on Christmas.

Still feeling a bit weak, tired, and sore, and with a headache that just won't quit, it was harder than I anticipated to jump back into the hyper-activity of a typical night with the kids, but I loved it nonetheless. After baths, it was time to do what Teddy had been waiting to do since Saturday -- decorate the Christmas tree. And so we did.

I teed up the ornaments while the kids dressed the tree.

I watched Teddy meticulously plan his approach with each ornament, and step back and admire his own work. At first, Annabel struggled to find a way to make the ornaments stay on the branch, but I didn't rush to her rescue. Instead, I watched her try and fail and try again. She eventually figured it out, and once she did, she piled those ornaments into a little hanging pile:


When the kids were done, the tree was a bit bottom heavy, and even though part of me wanted to keep it that way, I did a bit of rearranging after they went to bed. 

Last night, I said I was going to write about Dr. Joseph Murray. I included a Boston Globe article about him along with photos and good words. Another interesting article is linked HERE. Although this is the first paragraph to mention Dr. Murray's name, all of the preceding paragraphs were all about him. Here's why. 

In the last few days, I have learned that Dr. Murray was a remarkable husband, father, friend, surgeon, professor, Nobel Prize Laureate, World War II veteran, writer, and I'm sure a hundred other things I don't even know about. I don't pretend to grasp the full extent of this man's accomplishments from having read a handful of articles about him in the past few days, but I can gather one thing for sure -- Dr. Murray was a problem solver who never quit. As I sat in bed at the hospital where Dr. Murray performed the world's first organ transplant, at the same hospital where he died on Monday, I kept coming back to that role. And I kept thinking, Thank goodness for people like Dr. Murray.

I had no idea until tonight that Dr. Murray faced such criticism for his then-innovative ideas on organ transplantation. I also had no idea that Dr. Murray tried and failed for so long before he finally achieved what he believed in his heart he could do. Moreover, I never really thought about how many problems had to be solved before a team of doctors could make an organ transplant work. Now that I do think about it, I can't believe that they figured it all out. But all I have to do is think of Ashley to be eternally grateful that they did. 

In a way, I had it easy -- fake boobs that my body wouldn't reject. And even though cancer, chemo, allergies, and blood counts, rather than organ transplant, have been central to my world lately, in the end, it's all the same thing -- a problem that needs a solution. A barrier that needs someone with the creativity, courage, dedication, and sheer grit to knock it down. A patient that needs a Dr. Murray. 

As I watched Annabel struggle to get the ornaments on the tree, I thought about Dr. Murray. How he failed. How he tried again. And so I sat back and watched her figure it out. Not because I think she's a future Nobel Prize winner (although who knows, right?!?), but because I know the world needs as many problem solvers as we can possibly find. I also thought about Dr. Murray because ultimately, his work and the work of other doctors and scientists and researchers like him is more than just about solving problems. It's about giving patients like me the chance to watch our kids successfully hang an ornament on the Christmas tree and turn to us beaming, as if to say, I did it. 

Tuesday, November 27, 2012

Updates and Previews

Last night, my family took a little pool on today's ANC. Guesses ranged from 99 to 250. Lauren, the nurse in the family, guessed 175. Late this morning, Colleen and her oncology colleagues revealed that it was 171, so Lauren won the prize (something from the gift shop -- surprised?). I am told that the growth from here is exponential so there is still hope that I could go home tomorrow, but the team didn't make any promises. 

The day continued on as usual. I was blessed with the most wonderful nurse I have had in my stay  -- Jill. There was seriously nothing Jill could have done better. She was full of smiles, knowledgeable, energetic, and prompt with any request. My Mom and I told her supervisor all of this when we walked by her office. The supervisor responded that she sometimes wished she could clone Jill. I can definitely see why. 

Last night as I checked up on the news, I read the article linked HERE and I decided that today's entry would be about Dr. Murray. When my Mom and I got stir crazy around four and decided that finally we were bored of the gift shop, I told her that I wanted to take a walk around the hospital to see if I could find a portrait or more information about Dr. Murray. So we walked the length of "the Pike," which is a long stretch of hallway connecting Brigham & Women's with the old Peter Bent Brigham Building, to find some history. 

We walked by huge and beautiful portraits of medical pioneers and other legendary figures like Albert Einstein and Helen Keller. It was an inspiring walk. At the end, I saw a table of candles and a sign honoring Dr. Murray:   

I turned left to find a large wall dedicated to Dr. Murray's remarkable accomplishments: 


It was a beautiful exhibit, and included Dr. Murray's Nobel Prize and some good words from Dr. Murray: 


When we got back to our room, we ate our hospital food for dinner and I started to email the above photos to myself so I could write my post before Brian arrived. And then, out of absolutely no where, I felt it again. I'm calling it the heat of the devil because it feels like the devil is blowing steam in my chest. I wasn't even connected to the IV and it was so sudden that I panicked. I felt my neck get hot, and then the shortness of breath. I didn't want to admit it but I couldn't hide it. I frantically reached for the nurse call button as I told my Mom what I was feeling. Heat in my chest. When the nurse at the desk answered, all I could get out was, It's an emergency. 

As I sat back trying to control myself, about 12 people descended upon my room. I heard them page the medical ICU (MICU) doctor then more pages. Jill was by my side in an instant, telling everything would be OK. But I couldn't calm myself down. My legs were shaking, the heat persisted. It was quite the scene. Unfortunately, I've told this story before, and so you know the answer. Benadryl. They added IV Ativan this time, too, because my vitals remained stable, so much of the shaking was likely fright. I still don't know what to make of all of this, but Colleen assured me that the team is going to figure out why this happened and what we can do about it. In the meantime, I asked Sean to look into Lifeline products. I am too scared to be home alone without a way to get to help if I need it immediately and a button I can always reach will make me feel better. (It will also make me feel like I'm 90, but that's OK.)  

After the excitement ended, I fell asleep. Of course, my Mom kept vigilant watch the whole time. When I woke up, it was almost time for Brian to arrive. The whole incident ate up all of the time I had set aside to write about Dr. Murray so that will be tomorrow's plan. For now, I hope you get to read the article I linked above about this great man. At the very least, I hope you appreciate the quote from the wall we found on our walk tonight: 

Service to society is the rent we pay for living on this planet.
-- Dr. Joseph E. Murray

Monday, November 26, 2012


I sincerely hope that no one ever reads this blog thinking I have anything useful to share from a clinical standpoint because much of the time, I'm just trying to keep track of what day it is. Even this whole "counts" thing has me kind of puzzled, although slowly, I'd like to think I'm learning. From what I have gathered, there are two important numbers -- first, the 4.0 number, which means that there are 4,000 white blood cells in the sample; and second, this "absolute neutrophil count" or "ANC" thing which is a measure of particular white blood cells that are effective in fighting off infection. When Colleen told me my counts were zero she was saying that my ANC number was zero. So while we're watching the overall white blood cell count and hoping for 4.0 as fast as possible, my oncology team is most concerned with the ANC number, and they want it to be 500 before they feel comfortable releasing me back into the big bad germ-infested world.

As I posted in a brief entry this morning ("Trapped"), my overall white blood cell count came back at a pathetic 1.8, a far cry from the 2.8 I was hoping for. When Colleen and another doctor from Dr. Bunnell's team came in this morning to examine me, Colleen told me my current ANC count -- a whopping 33. Nope, I didn't forget a digit. Just Larry Bird's good ole 33. My jaw dropped. You've got to be kidding me. That's it? And I need to reach 500? Well me oh my. Thirty-freaking-three. The team thinks that Wednesday could be my big release day, but the doctor said it may take longer than that. And here I thought I'd have been home by lunch time this past Saturday. Very poor guesstimate.

And so today has been much of the same. I started the day with my usual blood draw and shot to the stomach of something that is supposed to help prevent blood clots. The IV antibiotics continue around the clock, and they must be working because I haven't spiked a fever at all today. My throat is still sore and my right gland is so swollen the nurse could see it from afar, but I'm feeling better and appreciating every chill-free and sweat-free minute.

After Sean headed off to work this morning, I took a shower, and not just any shower. A shower of joyful redemption. Here's why. After my double mastectomy, I couldn't shower for eleven days and for each of those days, I longed for that first shower (plus, back then I had hair, so showers felt more necessary than they do now). When I finally got my chance, it felt nice, but I was so distracted by how strange it felt to have water fall on my numb boobs that I really didn't enjoy it all that much. Plus, we were rushing to get to Teddy's soccer practice so I had to be quick. The whole experience just wasn't what I had hoped it would be.

My shower in the hospital yesterday and today, however, now those were some awesome showers. Thanks to fevers that make me sweat through the sheets (cute, I know), I was ready to get cleaned up and I took my sweet ole time under the perfect water pressure of my hospital shower. It was incredible, and total redemption for that elusive perfect shower of late September.

My Mom went to work today and popped over in between meetings to bring me lunch. After she left, I was on my own, which was actually really nice. When I started to get stir crazy I went shopping. Yep, back to the gift shop. Believe it or not, they had new merchandise even from yesterday! I decided that I needed some Christmas cheer in my room so I got myself (and Teddy and Annabel) a "Christmas in Your Pocket" tree and some Christmas socks. (And yes, when you spend more than 23 hours a day in a hospital bed, you tend to Instagram things that really don't need to be photographed, like shown here.)

I know I've become a regular to the gift shop, but I'm not the only one. For instance, twice before I have seen a mother pushing her child in a wheel chair. I couldn't tell the child's gender or age because he or she had a helmet on, clearly recovering from some sort of brain surgery. Today we all found ourselves giggling around the same basket of stuffed animals that were shaped like body parts and we got to talking. The mother was beautiful, energetic, and full of smiles. We exchanged names, but let's call her Jane for anonymity. The daughter was 26 years old, and we'll call her Amy. Through our masks we talked and Amy told me how she had been in the hospital since June. Yes, June. And I was complaining about being here since Friday. She had undergone a successful lung transplant but shortly thereafter, she suffered a stroke and has been in the hospital ever since. She had to learn to talk again and it seems like she may still be learning how to walk again. We chatted a bit more and said that we'd see each other around.

The very tiny bit I learned of Amy's story inspires me, angers me, and flat out terrifies me. First, for the inspiration part... Tonight was perhaps the most wonderful and difficult night here yet because Brian brought the kids in to visit. After drawing on my mask to make it look like the Cat in the Hat's face, Annabel was slightly less frightened of me, and we all journeyed to the cafeteria for dinner. We brought our grilled cheeses and pizza back up to the room and had so much fun for an hour (I even got to be disconnected from my antibiotics!).

When it was time to go, Teddy got sad. Really sad. I faked that I wasn't and told him all the reasons why this would all be OK, but I just wanted to stand there and stomp my feet and cry too. Annabel was fine at first, giving me a big hug and saying See ya, but I heard her wailing as I shut the door to my room. I'm sure Brian's heart was breaking just like mine was. It was awful. As I sat back down in my bed, I tried to think of anything that would make me feel better. And I remembered Amy. If that young woman can tough out this place since June, I could get through a few more nights.

But as I said, her story angers me too. Why couldn't that girl just catch a break? Was fighting through the recovery of a lung transplant, never mind whatever lead up to it, not enough? Why a stroke? Why her? I've been told I shouldn't ask Why throughout this whole thing. Which, in my stream of consciousness actually reminds me that I'm going to go ahead and answer my own why. I think I got breast cancer because of birth control pills. I don't have any clinical reason to think it, but I do. And even if it holds no truth, I don't care. Because it makes me feel better to think that what caused this is something that I will never do again. So that's that. Again, don't take it as any sort of clinical knowledge, but one day I may get the courage up to ask Dr. Bunnell what he thinks of my theory.

Lastly, Amy's story terrifies me because every now and then I wonder if this process really will lead to Totally Recovery, Full Stop. Amy deserved a Total Recovery, Full Stop after her lung transplant, but one thing lead to a horrible other thing and she's still working towards her Checkmate. The nightmare that haunts me every day is my memory of August 8, happening again. Because only this time can I hope for a cure. If, Heaven forbid, there's a next time, I could only hope for time. So cure it must be. Better yet, cure it shall be.

I have only cried once since I have been here, and it happened today when I least expected it. My friend Heather, one of the most selfless people I have ever met, had called to beg me to allow her to help with the kids, especially now that hockey season has started. She knows Annabel enough to know that Annabel gives serious attitude to people when she first meets them so Heather said she wanted to stop by the house when family was there so that Annabel could get to know her. I told her she could stop by tomorrow night because Brian has hockey and then is coming in to stay with me. Then I remembered that tomorrow is Brian's birthday. Heather asked me if the kids would like it if she brought cupcakes for them to decorate. And that's when I lost it. I sobbed over the phone. Heather probably thought it was because I was so sad I couldn't be there, and partly, that was it. But it was way more of something else. It was more one of those moment of absolute clarity that we have friends and family that are so thoughtful, so giving, so kind, that they pick up the pieces when they feel, or are, broken. They light candles at churches for us, and they pray. They cook us dinner, bring us snacks, babysit, rake leaves, and walk. They make cupcakes for the kids to decorate for Brian's birthday when I can't. I cried because I am overwhelmingly grateful.

When I mentioned Brian's birthday today he chuckled because he totally forgot. I can't imagine why. Well, he and I will celebrate his 33rd birthday together at the Brigham tomorrow night. Maybe I can find a little germ-free cupcake we can share. It's not really the birthday date either of us had dreamed of, but there will be plenty of those in the future. And tomorrow when we toast our neutropenic water bottles to Brian's birthday, we will also toast my ANC, which may have stopped today at 33 as a tribute to my husband, but which I'm confident will have moved past that milestone by tomorrow.

*  *  * 

Update from November 27, 2012, 3:13pm

I can't believe that some of the most incredible things can happen from a hospital room and a gift shop. After reading the last comment posted below from an anonymous reader (thank you so much!) I Googled Amy's real name (Ashley) and her hometown (Scarborough, Maine). I found her Facebook page: Air for Ashley and have been reading through her most inspiring story. How hilarious that Ashley and Joy showed up in my blog and I showed up in theirs! I highly recommend a cyber-visit to Ashley's page for some unbelievable evidence of love, strength, humor, and perseverance. Who knew I would walk by two real-life heros while buying Christmas socks? 


I thought it was a good time for a Bruce tribute. Especially since I just learned that my counts today are a measly 1.8, a full unit off of my goal. While trying to process the news which seems both incredibly depressing, because I can't see myself leaving the hospital any time soon, and very positive, since I am getting better rather than worse, I thought of this song. Enjoy. 

By: Bruce Springsteen

Well it seems like I'm caught up in your trap again
And it seems like I'll be wearin' the same ol' chains
Good will conquer evil and the truth will set you free
And I know someday I'll find the key
Then I know somewhere I will find the key
Well it seems like I've been playin' the game way too long
And it seems the game I played has made you strong
Well when the game is over, I won't walk out the loser
And I know that I'll walk out of here again
And I know someday I'll walk out of here again

But now I'm trapped! Ooh yeah!
Trapped! Ooh yeah yeah!
Trapped! Ooh yeah!
Trapped! Ooh yeahhh!

Now it seems like I've been sleepin' in your bed too long
And it seems like you've been meanin' to do me harm
But I'll teach my eyes to see beyond these walls in front of me
And someday I'll walk out of here again
Yeah I know someday I'll walk out of here again

Sunday, November 25, 2012

Counts Update

Since Brian is also sick right now (though he'll barely admit it), he has been kindly encouraged to stay away until he is well. It totally stinks, because I'd love to sit around here with him, but he needs to get better and so do I. At first I thought that meant he would go home and rest while grandparents, aunts, and uncles watched the kids. Then again, I should know my husband. Instead, he spent about four hours on the roof yesterday putting up Christmas lights. I like to call him Clark Griswold this time of year because he loves his outdoor Christmas lights, he has the never-ending patience of Clark Griswold while putting them up, and the lights usually don't all light up at first. But just like in the movie, they eventually do, and it's a beautiful sight to behold. 

I also just saw via text message a photo of our new Christmas tree. Apparently Brian's efforts to fix the lights on our old tree were for nought, and he decided to start fresh. Hey, I'm all for getting rid of old, broken, and troublesome things and replacing them with fresh, new, and perkier ones. I can't wait to get home and help them put up all of the ornaments. 

As I posted last night, Sean determined on his way out that our first goal of the evening was to fix the broken recliner and my second goal was to get one white blood cell. My Mom then added a third: To get a good night's sleep. Here's how we fared on these three goals. 

1. Fix Chair.

The damn thing is broken. My lovely patient care assistant rolled another recliner in after she agreed that that sucker wasn't going to be reassembled by an amateur. This afternoon, we burst out laughing when we saw the chair in the hallway with a sign: BROKEN. Engineering called 11/24/12. Thank goodness for engineers. 

2. Get 1 white blood cell. 

There is no where to go but up when you start at zero, and up I have gone. I may have this wrong but as I understand it, they somehow count the cells in a sample of my blood. I can go home when my count hits 5.0 (meaning 5,000 white blood cells) or maybe even 4.0. When I asked my nurse what we could expect today she said she really couldn't forecast it but she wouldn't be surprised with 2.5 or maybe even 3.0. I secretly hoped for 3.5. When it came back late this morning at 1.64 I was pissed. Seriously? A puny little 1.64?!? I'm going to be here a while, aren't I? I asked the nurse. She made one of those smiles that means, Yes, but I know you don't want to hear that so I won't say it out loud. 

And so the day has gone on much like yesterday, although my caretakers are alternating at a steady pace. Brianne relieved my Mom this afternoon, then Sean and Lauren tagged Brianne out. My visitor usually stays long enough to get the full cycle that I can't seem to break -- a cool, happy few hours, and a feverish, miserable few hours. Brianne came in the happy part so we went shopping. Yep, back to the gift shop. No matter how many times I go there, I always find something fun. Today I bought "The Yoga Deck" which is a pack of 50 cards each with a different yoga pose and instructions. I still can't get over how much I loved the yoga event and I'm determined to learn more, even if it means I'm doing it in my hospital room connected to an IV. Brianne also found the cutest thing for her baby too but it's a stocking stuffer for Seamus so I can't reveal any secrets.  

I have achieved this second goal of one white blood cell and have set a new goal for tomorrow. I want to hit 2.8 tomorrow and 4.0 by Tuesday. Then I hope to negotiate my way home on Tuesday night. That's my plan, anyways, but I can't believe I still even try to plan things when it comes to this process.

3. Get a good night's sleep. 

This I achieved, thanks only to Ativan. I haven't taken Ativan in a while, and save it only for those rare instances where my mind is in such a bad place when I'm trying to fall asleep that I think I could never do it on my own. But that only happens once every few weeks now, for which I am very thankful. Last night my Mom and I started that Hugh Jackman movie, Real Steel, which I must say, I was thoroughly enjoying before the Ativan dragged me into sleep. I may have to watch the rest of it tonight. Did I tell you that they have a bunch of good free movies here? Yep, one of the many perks.

*  *  *

Tonight Sean is going to take the spot on the recliner next to me. Brian had planned to, but I convinced him it wasn't a good idea. He has his first hockey try-out tomorrow morning at 5:30 and there's no way he should miss that or get up at 4:00 and commute out of Boston. He wouldn't take that for an answer so I played the you'll-get-me-sick card which worked much better.

I miss the kiddos terribly, and I can't tell if our frequent FaceTime dates are making that better or worse. Today when I talked to Teddy he asked me when I was coming home. He always takes a direct route to the most important question. I explained to him that I need to wait until the doctors tell me I can come home and they will say that when a magic number hits four. He asked where the number was now. 1.6, I told him, but I'm working hard to get it up to four as fast as I possibly can. He was satisfied with that answer, and gave me four kisses when we got off the phone to prove it.

I continued on through the day thinking that all was well at home until tonight when Brian told me that Teddy got really upset a few times today, crying that he missed me. I know most mothers would expect that after being away for a few days but it surprised me. Then it broke my heart. And then I felt pure rage at cancer. Rage like I have never felt before that something would hurt my family like this. It makes me want to cry and scream and punch something. But I'll remain calm if only because my head hurts too much to cry, my throat hurts too much to scream, and my arms are either hooked up to an IV or too sore to punch. Maybe I'll take Annabel's approach and kick someone's shin.

I worried when I sat down to write that I wouldn't have anything to say because I have basically done nothing since I wrote last. But clearly that's not the case, and I still have one more thing to share.

When I leave my room, it's when I feel good (when the fever hits, I still just curl up in misery on my bed). Yesterday I wrote about how pathetic I look when I go for a stroll and here's proof, from Brianne and my shopping excursion today:

Ever since I went bald, I can tell that strangers look at me oddly (people I know are amazingly fine with it, which so impresses me). Maggie calls the strange look the "cancer smile" and it's that quick look of, Awww you poor thing, before they look away. The cancer smile isn't necessarily a bad thing, and I'm sure I flashed it more than a few times in my life. I assume it comes from a good place in someone's heart so I am appreciative of it.

Kids don't give cancer smiles. I love kids because they just stare. And stare and stare. The first time it happened, I was in Target by myself and I almost started to cry. I felt like a monster. But now I enjoy their innocent little stares. I smile and wave and if they're really puzzled, I say something like, Do you like my silly haircut? They don't usually answer, still stuck in their confused stare, or they just smile, but by then their parents are usually horrified so I stroll on.

I still haven't worn my wig even once, although not because I'm trying to make any sort of statement. It's just not me. A bonus of that practical decision is that I feel like it helps to demystify cancer; to show people that cancer patients do all sorts of normal things, like shop at Target. In all honesty, I sometimes forget that I'm bald. I'll catch my reflection in a door or a window and need to reorient myself to my new look.

With the surgical mask and the IV pole, I rarely even see the cancer smile. It's not because I can't see through the steam from my breath that has gathered on my glasses (could I be any nerdier?), but rather it's because most people just immediately look away. Plus, in the hospital, it's a pretty common sight, so maybe I don't even stand out. Sometimes when I walk by someone else in here with an IV pole I want to stop and cling the poles together like a little Cheers!  But no one else seems interested in anything like that. So I smile, then remember that they can't even see it under my mask.

On my first few strolls out of my room looking this pathetic, a really weird thing happened -- I started to feel as sick and frail as I looked. It was as if I got into a costume and couldn't help but play the character. But today, that changed. Today I realized the irony in the fact that I may look frail and sick, but when I'm up out of that bed, I don't feel that way. I feel liberated and strong. When I got several looks of pity today at Au Bon Pain, I wanted to tell those people, I'm way stronger than you think I am. Then I remembered that they really just wanted to buy their lunch and couldn't care less about my thoughts on my appearance.

I like that "Goals" board so here are my new ones. Exciting stuff. Signing off from the 7th floor of the Brigham. Good night!

Saturday, November 24, 2012


Fun with cancer continues.

Yesterday I woke up not feeling so great. On the drive to Scituate, I remember thinking, I am so tired I can't even talk, but I figured it was just my first experience with fatigue from the chemo, or maybe it was the result of overeating the day before. So I pulled myself together and we had such a great Friday-after-Thanksgiving tradition. I got these photos to show for it:

Annabel was not interested in posing for a picture. 

So we went with just Teddy...

Determined, we tried one more time and ... Success!
Brian had been working on getting the lights to work on our fake tree all morning and when we got home, I collapsed into my healing chair while he tackled the tree lights again. The kids played at our feet but I was out for the count -- freezing with chills and feeling progressively worse.

When we were giving the kids a bath, Brian made me check my temp. 99.7. Not a problem just yet. Dr. Bunnell's instructions were clear -- page him with a temp above 100.5. Once the kids were asleep, we checked again. 101.7. Crap. We paged Dr. Bunnell and he told us to pack a bag and come into the ER at the Brigham. My parents came over to stay with the kids, and we arrived at the ER around 10pm.

I forgot how scary diagnostic tests are. They drew blood to check for infection, examined my still painful arm which had become red and warm, and took a chest x-ray to check for pneumonia. I had an interesting conversation with the rad tech before I posed for the x-ray. I told him I was so scared that the radiation would make cancer grow again. He said he could give me some numbers. I stopped him. Numbers aren't good for me. But neither was the nurse's earlier answer that pneumonia can be fatal when counts are low so we need to rule it out. She should work on a more comforting answer.

Once they rolled me back into my ER room, I was so hot and felt so sick, I don't remember much. I think I slept a bit and Brian sat, or paced, by my side. My temperature was climbing, maxing out at 102.4, so they admitted me. We got up to our room at about 1am and were finally done answering questions by about 2:30. In that time, we got a visit from our friend, Marissa, who is a nurse on another floor. Marissa assured us that everything would be fine. I never, ever, get tired of hearing that, especially from a nurse that cares as much and knows as much as Marissa.

Neither of us slept more than a few hours last night, mostly thanks to the IV machine that beeped every time I unknowingly bent my arm. At least Brian's recliner was a bit more comfortable here than it was in the ICU, so we're making progress.

Turns out I am neutropenic (thank you, Google, for the correct spelling -- Brian and I struggled to get that word down -- he kept calling it neutrogena). I am told this means that my white blood cell counts are extremely low. They are low alright, since my count in fact hit zero. So even though I really only have a cold, I am prone to infection and can't fight anything off on my own, hence the fever. They have been pumping me with IV antibiotics since last night. In the midst of all of this, Brian is fighting the same cold and I know he doesn't feel well. When it rains, it sure does pour.

This morning, a fabulous PA from Dr. Bunnell's team came to visit me. When she left, I told Brian how much I liked her. She had such a great demeanor -- smart, positive, comforting, and empathetic. When she came back later, the PA asked me if my maiden name was Talbot. I said that it was. Turns out that Colleen graduated from Canton High School a few years after I did, I graduated with her older brother, I taught her younger sister, and I worked with her mom. Unreal. Colleen was awesome and she makes me so proud of the great people my hometown continues to churn out. Plus, I'm just really happy she's helping me.

Colleen's attending physician, Dr. Parker was also totally wonderful. I told him that I felt very hot. We will cool you off then. Brian and I laughed. Because it was the best thing he could have said.

Colleen and Dr. Parker then explained that this was not going to be a quick stay. Because my counts were at zero, I've got a climb ahead of me until they are high enough to go home. They said it will likely take a few days. So here I sit in a hospital bed at the Brigham again, hooked up to an IV, frustrated, but trying to stay positive.

Tylenol has been helping my fever, but like clockwork, it keeps on spiking after a few hours of peace. It's a very predictable cycle and I have gotten to the point that I can tell about what my temperature is before the nurse even takes it. I'm enjoying a cool period now, as I was earlier today when my Mom and I took a walk to the gift shop. I must say, I am quite the pathetic looking sight walking down the hall pushing my IV pole with a surgical mask around my shiny bald head. As my Mom and I walked around the gift shop this afternoon I told her this was just the Small Business Saturday shopping trip I had dreamed of. Yep, this year I may do more holiday shopping in hospital gift shops than elsewhere. Fun times.

I have to admit that it's been hard to stay positive in the last 24 hours. When my fever spikes, I am miserable. I feel like my body is being leveled and I can't fight back, which is pretty much exactly what is happening. But when I feel better, like I do now, I can find the positive in all of this. The best news is that if the chemo has managed to put my counts at zero, it must mean that it has killed any remaining cancer. So in a way, this is all very reassuring.

I did, however, get really upset last night when I realized that I never said goodbye to the kids. Teddy was so excited to decorate the Christmas tree today and put up all of the Christmas decorations. Plus, he was expecting his Elf on the Shelf, which I remembered when we were still in the ER. Around midnight, I called my Mom and directed her to the bag in the basement with the elf. She put Freddie on a candle holder on the mantle so Teddy wouldn't be disappointed. (Side Note: The real Elf of a Shelf kind of freaked us out last year with his weird little grin so this year, we found a cuter elf and told Teddy that since he's a big boy now, there is a new elf that helps with his toys. Luckily, he bought it.)

Avoiding germs has now become top priority. I am not at all germophobic and believe deeply in the Three Second Rule so all of these neutropenic precautions are hard for me. But I'm abiding by all the rules and you can bet on my next round of chemo I won't be as cavalier as I was on this one. Because this kind of sucks. And I'm sick of Instagraming this view:

So now we just wait. Wait and watch numbers -- milliliters of antibiotics, white blood cell counts, body temps. Yep, the fun with cancer continues. And that's about it from the 7th floor of the Brigham tonight.

*  *  *  

As I was proofreading this, Sean and my Mom battled to try to extend the recliner out to the sleeping position. They ended up dismantling it into pieces so Sean left me with the following goals for the night. He always makes me laugh. 

Friday, November 23, 2012

Important Advice

Most of the time, I'm pretty skeptical of advice. I much prefer observing a person's actions or listening to his or her opinion on an issue over hearing a blurb of advice. That's not to say that I don't want to learn from someone else's experiences because I definitely do. I'm just not crazy about boiling down those experiences into a neat little package of advice.

Because I work off the premise that everyone comes from different life situations, I never assume that what worked for one person would necessarily work for another. I just figure that if we all casually share what worked for us and leave others to pick and choose what may work for them, then we can all help each other out.

Yep, I am not one to think I have any quick pieces of advice on anything, especially something extremely important and personal like raising kids. For instance, I can't believe I ever internally judged parents for keeping their kids quiet with a handheld video game at a restaurant. Now we will try anything to get our kids to sit still at a restaurant and I'm pretty sure that 15 minutes of Madden '13 while we scarf down a meal isn't going to set them on a bad path. 

Given all that, I'm definitely not one to give anyone advice on dealing with cancer. But on the night before Thanksgiving, I came up with what may be my one and only piece of advice for any family dealing with cancer. It's really simple, and (with a half-joking tone), I implore anyone at all connected with this adventure to heed it. You ready? Here it is: 

No matter how much you may love Matt Damon, do not ever, EVER, watch the movie, "We Bought a Zoo." 

Unfortunately, Brian and I learned this lesson the hard way. If you've never seen this movie, Spoiler Alert, because here's the basic premise: 

Cute young dad (Matt Damon) finds and marries the love of his life. They have a boy and a girl and lots of good times together. Young mother dies of what appears from all hints in the movie to be cancer. Adorable Kids and Cute Young Dad suffer through their grief for Late Wife/Mother. Cute Young Dad decides his hometown reminds him too much of Late Wife/Mother and moves Adorable Kids to totally different house that happens to be a run-down zoo. Personality-less zookeeper (Scarlett Johansson) and Cute Young Dad meet while trying to get zoo ready to re-open. Old tiger dies. Family still grieves. Cute Young Dad takes regular trips to Home Depot with Adorable Kid. Family still grieves. Personality-Less Zookeeper and Cute Young Dad finally kiss. Family still grieves but things improve slightly when zoo reopens and lots of people come. 

Forty-seven minutes into the movie, Brian and I were literally bawling our eyes out. Hysterically. We were trying to laugh about it, but that wasn't really happening. I convinced Brian that we'd come so far in the stupid movie that we had to keep going because there was no way it would continue to be so sad. Movies always start with the sad parts but now it will turn into the love story and them fixing up the zoo. Yeah, that never really happened. Down to the very last scene, Cute Young Dad and Adorable Kids desperately missed Late Wife/Mother. 

Here's the kicker -- it was based on a true story. Oh yes, after the last scene, Brian and I somehow read through our eyes full of tears that Benjamin Mee and his two kids still live at the zoo. You've got to be kidding me. I told Brian we should check on Wikipedia to see if maybe, by chance, Mrs. Mee perhaps died of something besides cancer. As if that would make us feel better. 

I have never seen Brian cry so much in his entire life (and he's OK with me writing that). I tried to make jokes, which were not at all funny. I assured him that this must have been before Herceptin. They should have written that in the credits, I told him frustrated. I was at the zoo when you told me, was Brian's only response. Holy crap. He was. 

Well, shit. I lost it. I have never cried so much in my entire life. We just sat there, an absolute total mess of tears, on the midnight before Thanksgiving. You should have gone drinking with your high school friends, I told Brian, laughing/crying. Or we should have watched a different movie

We were suffocating with pain. Raw, terrible, I-don't-know-how-I-will-stop-crying-and-get-off-this sofa pain. It lasted far too long, which may have only been five minutes. But then, I started laughing. I don't know why. I think it was the irony in the fact that we never have time to sit together and watch a movie, that we chose this movie which was basically the nightmare we wish to avoid every night, that we didn't fall asleep in the middle like we usually do, that Brian was at the zoo when I told him. Obviously I wasn't laughing at this family's grief. But I couldn't stop laughing. Hysterical, I-don't-know-how-I-will-stop-laughing-and-get-off-this sofa laughter. Brian caught on too. I don't think we have ever laughed so hard together. 

Earlier that day, Brianne and I decided that next year we are starting a night-before-Thanksgiving tradition with our families (I can't believe little James Joseph will be here by then!). I think it's the best idea, and not only because we need something besides complete and total emotional meltdown on the night before Thanksgiving.

Much of the time we were watching the movie, I couldn't help but wonder if it was a forecast of things to come. Unfortunately, Brian's hair is not nearly as full as Matt Damon's, and I'm pretty sure he wouldn't buy a zoo if something happened to me (he doesn't ever even want a pet). More importantly, if, Heaven forbid, anything ever happened to me, I sure as heck hope he finds someone with more of a personality than Zookeeper. (In fact, before I even had cancer, my cousin Tara had a very funny act comparing how she would want her husband to grieve forever if something ever, Heaven forbid, happened to her, while I would want Brian to immediately move on and find someone else. Seriously, I would, but he hates when I say that.)

Anyways, now that I have collected myself, I realize that We Bought a Zoo is a forecast of things to come, but not at all in the morbid way I had been thinking about it as we watched it. Somehow, from the worst sad-crying we have ever experienced, we found laughing-tears. In the end, we made a very bad movie choice given the circumstances, and I really do advise anyone in this situation to stay far away from that flick. Next year, we'll begin a new family tradition and I'm sure we will laugh so hard about our response to We Bought a Zoo. That's the forecast as I see it -- many years of laughter and much more careful movie choices. 

*  *  *

I can't help but note that on one of the most beautiful autumn days I have ever seen, the Canton Bulldogs pulled off an unbelievable underdog win (in overtime) at the Thanksgiving Day football game. Absolutely awesome, and the start of what may have been the best Thanksgiving I have ever had.

Tuesday, November 20, 2012

Thanksgiving Thoughts -- Take Two

We moved to Canton exactly 25 years and three days ago. I'll never forget the date; it was November 17, 1987 (it's easy to remember because November 17th was also my Grandpa Lang's birthday). That first Thanksgiving in Canton, I don't think we went to the high school football game. We probably should have because I've since learned that Canton football was red hot in the '80s. According to a town news source, Canton lost only one Thanksgiving game in that entire decade -- in 1982 -- and only by a score of 7-6.

In 1987, however, I'm almost certain that my Dad took us to Harvard Stadium to watch his alma mater, English High School, play. To this day, my Dad still watches games at Harvard Stadium every chance he gets, and just last week and he my Mom watched Harvard beat Yale in the historic rivalry (OK, my Mom may have been shopping in Cambridge by the time Crimson victory was declared, but my Dad was still there whistling). My Dad loves that stadium, not only because it's breathtaking, but also because he played his high school Thanksgiving Day football games there, and those are some of his favorite earlier memories. 

From 1988 on, however, me and my Dad have loyally attended the Thanksgiving Day football game between Canton and Stoughton. Apparently the rivalry dates back to 1926 and maybe it's the former history teacher in me, but I find that sort of tradition remarkable. So this entry is about tradition. More importantly, it's about my Dad. 

If my parents were sportscasters, my Mom would do the play-by-play and my Dad would be the color commentator. They're the perfect combination that way -- my Mom buys all the holiday decorations and organizes them into boxes (and boxes, and boxes, and boxes) while my Dad has the spirit to actually dig them out of the basement when the actual holiday rolls around. I don't think you could pay my Mom enough to go to a football game on Thanksgiving -- in fact, she'd even rather cook, and she hates to cook -- but my Dad will stand in a blizzard to watch Canton High School suit up against the town's next-door-neighbors. 

I love sitting with my Dad during those games. He always brings blankets and wears either his navy blue English High cap or his crimson Harvard Football hat. I'd expect a Boston College hat since that's where he played college football, but for some reason on Thanksgiving, his loyalties run to Canton, English, or Harvard Stadium. My Dad cheers loudly for Canton at those games, calls every player "son" like he's back in Roslindale, and tries to embarrass me with some wise, but funny, comment about something. Luckily, years of sitting at football games with him have made me mostly embarrass-proof, so I just enjoy his humor (and his own enjoyment of his humor) and hope that no one around us is listening to him. 

One of my Dad's favorite parts about the Thanksgiving game is the Stoughton High School marching band. My Dad played trombone when he was younger and he loves watching our rival's skilled musicians. I have to agree -- those kids really are something else. 

This year, it looks like the weather may be amenable enough to allow us to take both Teddy and Annabel to the game too. Teddy will want to sit between Brian and my Dad, but he'll grace me with some of his attention at some point, I'm sure. Annabel will probably just want to run up and down the bleacher stairs, so I'll be sure to wear my sneakers over my extra pair of socks. I can't wait. 

The Friday after Thanksgiving is another tradition of which my Dad is the master of ceremonies. Since I can remember, we all load into the car and head off to this totally random store on the South Shore that is bursting at the seams with Christmas stuff. The owners of this store are very, hum, let's say quirky, and we look forward to paying them a visit every year. Then we all drive to Scituate for a lunch at the Mill Wharf. This restaurant is, again, pretty darn random, but I guess that's what makes it such a tradition. There we eat stuffed mushrooms, some sort of fried food, then a huge brownie sundae, and that is all the day right after Thanksgiving's feast. Impressive, huh? I usually stop to make people pose for photos somewhere along this route and here are a few from last year. It's so cliche, but I really can't believe how much Annabel has grown in one year, and I just love her frown against my smile. 

Next we do a little more Christmas shopping in Scituate center. Then it's off to get the Christmas tree. Only here's the great catch to this part of the holiday tradition -- we have finally found a way around the torture of actually getting a Christmas tree. When we were growing up, we would choose the biggest tree we could find at Kennedy's, a great nursery down the street from our lunch spot. An outdoorsy-looking man would load it into the car as we all crammed in beside the prickly tree and held onto it for dear life. I can't believe we really did this. Later, we graduated to putting it on the roof, and with that approach, all of the passengers would nervously watch out the back window to make sure that the tree made it all the way into our driveway. It always did, except for one time, but that's a whole other story. 

Then came the part of the tradition that really sucked -- getting the tree up. Rachel and I would usually fight while "helping" my parents carry the tree into the house (Sean would still be asleep in the car). My Dad would rush to get it in water before it closed up, and that would usually be somewhat of a disaster. Then we'd wait a day or two while the branches fell. Next came my Dad stringing the lights. My parents always had this beautiful vision of stringing lights and decorating the tree but the vision versus the reality on that one was about as precious as Annabel's poop in Barnes and Noble. Let's just say, I think I learned my first four-letter words by watching my Dad put the lights on the tree. 

Then, of course, there was the daily watering of the mammoth beast with the weighty watering can. Team that duty (which of course, fell to my poor Dad) up with the fact that he always seemed to be having some sort of arthroscopic surgery around Christmas, and the tree started to get to be a big pain, both literally and figuratively. But it was absolutely gorgeous, and it was a Christmas tradition, no matter how painful it was for everyone involved. 

A few years ago, around the time that my Dad got one of his knees replaced, my parents floated the idea to Rachel, Sean, and I of an artificial tree. Hell, no, are you kidding me? was pretty much how we all responded. Kind of like the kids who want the dog that they'll never walk or clean up after. We carried on the tradition of the real tree for a year or two more. Then my parents had had enough of the painful tradition and made the ghastly leap to a fake tree. At first, we struggled with the change. We're a real flexible lot, huh? Soon, however, we all came around. The tree comes with the lights already on and we literally roll it out from the garage and plug it in. There's usually some issue, but it's relatively small; far less swear words over the Christmas music, that's for sure. The best part is that my parents leave the tree up until April. Or maybe it was even May this year when they finally bagged it up again. I remember we were thinking of buying them Easter ornaments for it and my Dad loved the idea. Sometimes certain people conjure up a very clear image for me and for some reason, one of those images of my Dad is him walking in the house, strolling over to the side table by his chair in the family room, and turning on his tree by remote control. As I write this, I can hear the sounds, see the lights, and even smell the smells of that scene. I love it. 

Brian and I switched to a fake tree when Teddy was a baby. I literally remember finding tree needles in his diaper when we decided maybe an artificial tree would be good for us. We love our little tree, and even if it's fake to others, it's totally real to us. I can't wait for Brian to drag it up on Friday night. Although I know Brian's a bit scared of that big plastic bag; about a month ago he found a few little mice friends doing a dance in there. Brian hates mice, but I think it's hilarious watching him put his headphones on high (he hates the sound of the mice) and use his hockey stick to battle the little critters. Ah, the joys of the holidays. 

Even though I have my own kids now, in my heart, I'm still my Dad's little girl when it comes to the holidays. My Dad may not buy a single gift until Christmas Eve (thank goodness for an incredibly independent and capable Mrs. Claus), but he fills the whole season with spirit. While my Mom has taught me valuable lessons like it's never too early to buy someone a Christmas gift, my Dad has given me the priceless appreciation of Thanksgiving football, Scituate harbor, and Christmas cheer. 

Perhaps the most amazing thing about all of this is that my Dad's childhood Christmases were nothing like ours. My Dad's childhood and early adulthood were not easy. Sadly, his father was an alcoholic and although my grandfather was sober for the last decades of his life, a lot of damage was done long before that. 

Last night I couldn't sleep so I turned back to that Hope book of compiled quotes that I found in the hospital gift shop. I found this one from Unknown

Every life has its dark and joyful hours. Happiness comes from choosing which to remember. 

In the rare instances that my Dad shares with us something dark about his childhood, he somehow finds a way to make it funny. He really does have one of the best sense of humors I have ever come across. But even though he somehow makes us laugh at stories like those about the nuns beating him because of his severe dyslexia, I'm pretty sure that deep down, there's pain. He's human, so there must be. And yet with years of struggles about which he could complain or because of which he has every right to turn sour, he still shares memories about the good times, and cherishes everything he has done for us that his father never did for him. There's no doubt that my Dad is sincerely happy when he talks about the Scottish strength and sweet kindness that he adored in his mom, Ruth McInnis Talbot. Or when he talks about his job selling peanuts at Fenway, or shoveling driveways, or delivering newspapers, or countless other things that he did to make money to support his mother and his four sisters. Somehow, my Dad chooses to remember the joyful hours, and those keep collecting over the years. 

My Dad has been through a heck of a lot in his life, and despite all of it, or perhaps partly because of it, he has found great happiness. Whether it's at a football game, at lunch in Scituate, or unzipping the great big fake tree, my Dad not only chooses to remember the good for himself, but he chooses to create so much good for all of us. 

I know that me getting cancer has been really hard on my Dad. I've never seen him cry the way I saw him cry the day that I found out. I've never seen him so mad, and like any kid, I've seen my Dad mad (tree lights, remember?). But this was a different kind of mad. It was a how-could-life-be-so-f-ing-unfair kind of mad. Yet my Dad is the one who has told me time and time again that bad things happen to good people. Yes, they do. Luckily, really good things happen to good people, too. 

In a weird way, it's kind of amusing watching how differently my Mom and Dad deal with my cancer. Again, my Mom does play-by-play and my Dad does the color commentating. At first, I thought he wasn't watching the play-by-play because he remained relatively quiet on the topic. But I quickly realized that couldn't be further from the truth. He's watching every single step, it's just really hard for him to see, and even harder for him to find the words sometimes. If I think of it in the context of Brian watching Annabel go through this, it all makes perfect sense to me. Because Brian would be crushed. 

Thankfully, my Dad has mastered the art of remembering the joyful hours. As he reminds me over and over, next year, this will all be in my past. It definitely will, and from his lead, I will choose to remember all of the joyful hours that made their way between a few dark ones. In fact, if I'm lucky, and I'm certain I will be, I won't even have to wait until next year to feel that happiness. Because I know I'll find it sitting next to my Dad on Thursday. 

Monday, November 19, 2012

Thanksgiving Thoughts -- Take One

Since I was in high school, this week has always been one of my most favorite weeks of the year. I know I'm not unique in this respect, and I love what most people love about this week -- family gatherings, football games, mounds of food, the first Christmas preparations. In fact, if I was forced to decide on my favorite holiday of the year, I would choose Thanksgiving. So you may be surprised when this entry takes on a bit of a sour attitude. Apologies in advance. I can just feel it coming.

Sometimes when I choose to write about a predictable topic, like Thanksgiving on the Monday before the holiday, I stop and think about the predictable approach. I ask myself, What would a reader expect me to write? I try to answer, not so that I can meet those expectations, but so that I can identify them as just that -- only expectations -- and not tie myself to them, even subconsciously, as I start to write about what I really think.

Tonight as I asked myself that question, I started to think that many people would maybe expect an entry about how this year more than any I will be thankful for all of the good things in my life. That I will savor the taste of turkey like never before. That I will stop to cherish every play at my hometown football game and every moment seated around the table with my family. Yeah, that would be the sweet, neat, pretty entry. But for me, at least tonight, that just wouldn't be the whole truth. 

At the risk of sounding like a brat, I again find myself trying to pick myself up from a sour mood. I find bad moods are the worst when I can't really figure out why I'm still in one. And tonight, that's just what's happening. 

It's not like anything drastically bad happened today. I went into Ropes to meet with Wendy, my pro bono client I have mentioned before, and the other two associates with whom I am working on Wendy's case. At Ropes, I saw so many great people that I hadn't seen in far too long, and they made my day bright. My family had previously blessed my Orange Line trip from Back Bay over to my own office (my counts don't drop really low until about one week after my treatment), and it felt liberating to travel on public transportation. When I got to my office, it was so nice to catch up with my colleagues, and I enjoyed some left over Chinese food from the group lunch I had missed a few hours earlier -- yummy (then heartburn). I had planned to stay at work until six, when a group of my law school friends were getting together for a long overdue dinner out. But by 3:30, I couldn't stand the pain in my arm any longer, and I had to go home. That's when my bad mood set in. 

Ever since my treatment last week, my right arm has felt like someone took a baseball bat to it. In my years playing sports, and then just being a klutz who tripped and slipped on things, I've had some pretty bad bruises. Since last week, my arm feels like it should be covered in the worst black and blue I have ever experienced, only it's not black and blue at all. Aside from the hives over the weekend, there's nothing there. This morning, I got fed up with the pain, so I left a message for Danielle, Dr. Bunnell's P.A., to see if she had any advice. 

Danielle called back in the middle of my meeting with Wendy so I ducked out for a few minutes. Danielle told me that there are two things that they watch for with the kind of pain I was describing. The first was infection, but since I didn't have any redness or swelling, she didn't think it was that. The second was a blood clot, but she didn't think it was that either, thank goodness. For now, I'm just supposed to take Advil regularly and keep warm presses on it. So that's what I left my office early to do, and what I've been doing ever since. Until I had to start typing this out, of course. 

Having to cancel on my friends definitely put me in a bad mood. I managed to bounce out of it after my entertaining commute home with my Mom, despite that it took us an hour and 20 minutes to get home (my kind, smart, loving mother can throw an awesome left-of-the-right-ring-finger when she gets cut off and that always makes me laugh). I ate dinner with my arm wrapped in a heating pad, and our good friend Conor, who visited with Spinelli's in hand, kept us all in great company. Whenever Conor comes by, we have our obligatory laugh about the day Brian and I got engaged -- Brian asked me to marry him on the Bowdoin College quad on Columbus Day weekend, 2004. After I said yes (or maybe I just cried and put the ring on, but I meant, yes), we headed to the football game to enjoy an October day in the sun. There we saw Conor and when we wanted to grab something to eat, we invited him to join us. So off we went -- Brian, Conor, and I -- to celebrate our engagement at the all-you-can-eat-Chinese-food buffet just beside the Bowdoin College football field. Ah, China Rose. How yummy are your crab rangoons and soft serve ice cream sundaes. I guess I always was a cheap date. 

I've gotten off track. Yes, it was great to see Conor and my arm felt slightly better with the heat and the Advil. I'm trying to not be bummed that I missed my law school friends tonight because I'm hopeful that I'll get to see them sometime soon. But tonight has showed me something I'm really not great at; a weakness that always puts me in a bad mood -- admitting that I don't feel good enough to do something I planned to do. 

Which brings me back to this week. Aside from Christmas, Thanksgiving may be one of the busiest days of the year. On a typical Thanksgiving, we go to the Canton-Stoughton football game, then to Southie for Brian's family meal, then to my parent's house for a second family dinner. It's a jam-packed day, and I love every single minute of it. I usually even get up early to clean or exercise so that I can savor having the whole day ahead of me. I cherish it that much. 

What's making me mad tonight is that I really didn't need cancer to remind me to be thankful. I swear, I couldn't have been more thankful on prior Thanksgivings. I would always think to myself that being together and being healthy were what mattered most. Everything else was just details. 

But this year, there's a certain detail that kind of pisses me off -- it starts with can and ends with cer. I'm mad that it's going to make my favorite jam-packed day harder to stomach. I'm mad that it's going to make the turkey that my Dad so loyally bastes all day long taste like metal. And I'm mad that my stupid arm hurts so much that I really should go apply more heat. 

The other day I heard that Tim McGraw song, "Live Like You Were Dying." I used to like that song. Now I freaking hate it. I went skydiving, I went Rocky Mountain climbing, I went 2.7 seconds on a bull named Fu Man Chu, And I loved deeper, And I spoke sweeter, And I gave forgiveness I'd been denying, And he said, "Someday I hope you get the chance to live like you were dying." I think I'll barf now. Fine, I'm glad cancer gave Tim McGraw's real or invented friend some perspective. But I swear to you, I didn't need cancer to help me love deeply. I really already did. 

I also find it hard to believe that someone going through cancer treatment can find the time, money, or energy for skydiving or mountain climbing. I'm lucky if I get a shower, and now I dread those because I'm afraid the heat is going to cause me more hives. So I take colder showers. Fun. 

And I don't want to ride in any f-ing rodeo. I just want to sit at the Thanksgiving Day game with my Dad like I have every year since I was eight. I want to have the energy to chase my kids up and down the bleachers, and then pack them in the car to drive to Grandma's house. I want to return to my parents' house and sit around the table until we're too tired to talk or laugh anymore. And I want to fall asleep in a food coma, not a nauseous-from-chemo coma. 

Alright, it's official, this rant definitely makes me feel like a brat, which actually just makes me feel worse. Screw it. Maybe it wasn't the right approach, despite my pledge for honesty above all. Tomorrow, I'm going to write about my Dad and his awesome Thanksgiving week traditions. Because I haven't written enough about my Dad, and his traditions could bring me out of my very worst mood. Yeah, I definitely need a "take two" on this Thanksgiving entry. Count this one as the devil on my shoulder, or my sore right arm, if you will. Tomorrow will be the angel on my other shoulder, or better yet, my left arm -- the one that's not at all sore because the infusion can't come through the arm from which my lymph node was taken. Which reminds me, that lymph node was negative. Maybe I should have just remembered that an hour ago and called it a night. 

Sunday, November 18, 2012

Hives and Drives

Over the last few days, I have been piecing together much of what happened at the hospital last week. It's been frustrating, because at the time, I thought I was totally with it. However, in retrospect, I realize that the massive amounts of Benadryl and other drugs put me on a different planet and my memory is all messed up. For some reason, yesterday, my screwy memory really upset me.

For the most part, the drugs didn't completely erase my memory, although there are a few conversations I had and doctors that I met that my family has told me about that I honestly cannot remember. Mostly though, when my Mom, Brian, or Sean reminds me of something that happened in the hospital, I slowly remember it. At first, it was kind of funny to have such vague recollections of days of my life, but then it started to really weird me out.

My frustration didn't come out of no where. It began yesterday while I again was feeling the effects of Benadryl. Yesterday morning, Brian got up early with the kids so I could sleep late. It had been a tough night before, full of severe hot flashes and periods of being freezing cold. When I got up around 8:30, Brian was taking the kids to the rink for Teddy's hockey practice and he convinced me to stay behind. I felt really nauseous and hoped to work it off on the elliptical. But just after I got done with my 30 minutes of exercise, I felt terrible itching on my right arm, stemming from the spot of my main infusion. I looked down and noticed that my whole arm was breaking out in hives. I tried not to panic, but the room started spinning.

I was so scared that something worse was about to happen. I reminded myself of the mental power I found in the hospital a few days earlier. But it didn't really help. When I was in that hospital bed, I felt relatively safe. But yesterday morning, I felt vulnerable and very, very alone.

I didn't want to scare Brian when he had both kids, so I called my Mom. She told me to page Dr. Bunnell, and I immediately took my emergency stash of Benadryl. We debated whether or not I was overreacting, and I really didn't know. All I knew was that I was scared out of my mind and wanted someone there in case a more serious reaction was on its way. I called my neighbor to come sit with me, and I was so relieved when Amy arrived minutes later.

My hives receded quickly with the Benadryl, but my fright did not. I was so mad at myself that I couldn't muster up the strength I felt in the hospital. Thankfully, Amy successfully distracted me from what could have been a terrible panic attack, and I didn't have any further reaction. I'm sure one day Amy and I will laugh about how scared we were sitting on my sofa, but at the time, it just kind of felt like a shitty situation.

After I took the Benadryl, I was totally out of it again. That's when I started getting frustrated at my memory. For some reason I got thinking about earlier this week and I got really upset when I couldn't remember coming home from the hospital. I don't remember leaving Boston or what was going on when I arrived home. Brian and my Mom reminded me that my Mom drove me home early Thursday morning. I remember my Mom sitting in the recliner at the foot of my hospital bed Wednesday night. But then for a few minutes, I couldn't remember Thursday.

This was especially disconcerting because eventually I remembered that Thursday had been a really nice day. Brianne and my Mom had conspired to arrange for Brianne to take the day off from work to, well, babysit me, and we had such a nice day together. We worked on Brianne's baby registry and went through the baby stuff in our basement to see what Brianne and Seamus could use. I remember when Brian got home from school, I was sitting on the sofa and I fell asleep while we were all talking. When I woke up, I felt so bad that I hadn't even said goodbye to Brianne and I hadn't even realized that Brian had left to go pick the kids up from school. In the throes of my memory frustration yesterday, I sent my Mom the most random text to ask her if she went to work on Thursday. I just couldn't remember. She had, and then I recalled that she had a work dinner that night and didn't get home until really late.

Friday is much less blurry. I decided to get out of the house and join my Mom at a talk that she was giving to a group of physician recruiters at a conference in Boston. My Mom is an incredible, and I mean, incredible, presenter, and I sat there in amazement as she taught the audience how to turn "difficult conversations" into "learning conversations." I learned so much from my Mom's presentation, including that pretty much every time Brian and I get in a tiff, I say all of the wrong things. But mostly, I just sat there in absolute awe at my mother.

My Mom worked at Children's Hospital for over 15 years while we were growing up. I have such vivid memories of her taking Rachel and I into work with her -- of us going to the Coop to buy stationery and eating lunch at the Galleria. I remember going into the gift shop at the main hospital, xeroxing homemade math worksheets on her copy machine, and sitting at the table in her office while she talked on the phone. Somehow, in addition to her full-time job as a hospital attorney and human resources vice president, she also taught classes at Stonehill College and later, at Providence College. I remember tagging along to her classes several times. I couldn't help but notice how much her students adored her, just like all of her work colleagues did, and I couldn't believe that I got to be the one to drive home with her.

Speaking of drives home, my Mom has always had a pretty substantial one. She spent years commuting from Duxbury to Children's. Finally, my parents decided the commute was too much so they moved closer to Boston -- to Canton. But then my Mom took a job on the other side of the city -- in Winchester, and her commute grew again. On a regular day, it can take my Mom an hour and a half to get home from work, and with rain, snow, or an event at Gillette Stadium added to the mix, it can easily take two hours.

My Mom tries anything to keep herself sane in those ridiculous commutes. Much of the time, she catches up with me, Rachel, or Sean over her handsfree phone, although it shocks me that we don't make her more crazy during that time (or maybe we do, and she is just really good at hiding it). But somehow, my Mom still sounds happy to talk to me every time she's driving home from work. Whenever our schedules line up, my Mom will pick me up from my office and we drive home together. Those commutes are priceless to me, and the hour from Boston to Canton feels like five minutes.

In the craziness of my allergic-to-Taxotere issue, I kind of forgot that with the chemo comes lots of other crap. Last night, the hives returned on my arm, and I have absolutely no idea why. Other symptoms have had my mind racing into bad places, and I'm trying desperately to keep on thinking of my Allies as allies even though lately they have felt like something far less friendly. As I enter this tough-it-out phase, I'm reminded of my Mom, her commute, and her years and years of hard work. Because in my bad mood of yesterday, I realized that so often, the true test of someone's grit and determination doesn't come by the first time they achieve something, from their first successful year at a job, from the first presentation they give at a conference. Sure, those firsts are important, but the people that really impress me are people like my Mom, who tackle a challenge again and again; who commute back and forth, over and over; and who somehow do it all with grace, humor, and only a few sporadic swear words.

I'm sure every blog post I've ever written boils over with my pride for my Mom. Still, I can't even rightfully express the pride I felt for her this past Friday as I sat in the audience at the Fairmont Copley Plaza Hotel. Because Friday, my Mom was the absolute definition of resilience. Of persistance. Of grit. It takes a special lady to sleep in an ICU with her daughter one night and present down the street at a conference a day later, and my Mom, well, she really is a special lady. I may not remember the drive home from the Brigham last week, but I remember all those other trips home we've had together, and for all of them, I am forever grateful.

Thursday, November 15, 2012

Round Two: Mission Accomplished

Just after midnight last night, my veins were full of all of the Herceptin, Taxotere, and Cytoxan that I checked into the hospital the night before to receive. The nurse removed one of my two IVs, leaving the other in my bicep just in case I had a delayed reaction in the middle of the night and they needed to pump drugs in fast. Thankfully, that never happened. Instead, after Sean turned the lights out on me and my Mom around 12:30am, I fell almost immediately to sleep and didn't wake up until six. (Brian left after the Taxotere infusion was complete to relieve Brianne and Seamus, who had relieved Janice and Paul, of the marathon babysitting duties.) Sleep (albeit, Ativan induced) felt wonderful.

Tonight I feel enormous relief to finally have my Allies back on board. It was unsettling, and even downright scary at times, being alone without them for these past few weeks. I know that the next few weeks will bring some nasty side effects. But those are nothing compared to all of the good that my Allies are doing inside -- all the years they are giving me to live my life, and enjoy it to its very fullest. 

Last night when Katie, the chemo nurse who took such good care of me all day, retrieved the last bag of Taxotere from the pharmacy, she noticed that the internal bag of the drug had leaked into the outer bag. She was not pleased, and I was very thankful for her decision that we were not going to mess around with a leaky bag. After consulting with several members of her team, Katie requested a new bag of Taxotere. It was going to take an hour to prepare and retrieve it from the Dana-Farber pharmacy next door, so I braved the sight of my far less fortunate ICU neighbors, and Brian and I went on a slow and steady walk to the gift shop. There I found a few cute Christmas gifts, and I found a great little book called Hope which is full of inspirational quotes just like the ones you'd expect to find from me here (I know, I'm getting kind of predictable). Many of the quotes are very rich, but one especially caught me last night when I got back to my bed. 

Believe that problems do have answers, that they can be overcome, and that we can solve them.
-- Norman Vincent Peale

I always Google the name of possible "quotees" before I include them here so that I don't end up posting words of a total looney-bird. Some brief research on Mr. Peale reveals a controversial character and one with whom I would forcefully disagree on several issues, including that our nation would be doomed with a Catholic (John F. Kennedy) as our President. So I wish to include the quote without any looney-bird baggage, and without any particular shout-out to Mr. Peale. Because I still think that the quote is a powerful one.

Until two weeks ago, I had absolutely no idea that someone could be allergic to chemotherapy. It took me a while to process that I was, and since chemotherapy is something that my life likely depends on, that wasn't always easy. Soon I learned that I am one of many people with this particular allergy, and with the need to press on regardless. I learned about the desensitization process, and about all of the precautions that the doctors and nurses take to avoid anaphylaxis and other reactions. Gradually, I believed that the process would work for me if only I was given the chance to team up with it. After the skin test, when I was handed that chance, I knew I could do it. Once again, what had seemed like an insurmountable problem, yet again, had a solution.

When Brian and I were wrapping up our trip to the gift shop, Sean came running in telling us the new bag of Taxotere was already prepared. I hurried back while Brian paid for items that probably had him murmuring under his breath, What the heck is this for? He doesn't always understand things I purchase, but that's OK.

I hopped back in my bed and Katie hooked me back up to the monitor and the IV. On this last bag, the desens protocol called for my dosage to begin at 20, then increase to 40 for another internval, then jump from 40 to 80 for another two hours and 45 minutes (sorry, I don't know the units we were talking about, I only became familiar with the numbers). Eighty was the dosage amount that I began on when I reacted two weeks ago, and I admit, that I was nervous to approach that speed again.

I did fine at 20. But when Katie turned it up to 40, we all noticed a number on the heart monitor start to climb. And climb. I didn't feel well. My insides felt hot. Katie was right there to turn off the machine and insert some IV Benadryl. We waited until my body found peace again. Then Katie started up the Taxotere once more. I carried on with the 40 for 15 more minutes, getting myself relaxed enough to start to read the Hope book and come across the quote above.

Then came the acceleration to 80. That, my body couldn't handle. In much slower motion and with much lesser intensity, I felt the symptoms that instantaneously overcame me on my Halloween round. Heat in my chest, throat and chest tightening, more heat, flushing, more heat, shortness of breath. Brian, Sean, and my Mom's eyes were glued to the heart monitor. My heart rate was rapidly accelerating. It's starting to happen, I told them. But everyone already knew, and everyone had already started to act.

Then the most amazing thing happened, something for which I will forever be proud -- while Katie and her expert team assembled to reverse the impending reaction, I closed my eyes and told myself I wasn't going to let it happen. Perhaps I'm foolish to think that my mind could have such power over my body, but somehow, in those few minutes, I whole-heartedly believed that it could. Maybe it was all that practice on the elliptical, on my walks, and at CrossFit convincing my mind that it has the power to control the good and the bad in my body. Maybe it was an angel watching over me. Or maybe it really was just pure science, including the drugs that Katie was pumping into my emergency IV. But I'm going to let myself believe that my mind had something to do with it. Because in those five or ten minutes, I believed in my heart -- my physically confused and whacky heart -- that I could control this thing; that it would not take me over like it did last time. And it didn't. In those minutes, I felt the feeling I had been dreading most for two weeks, I faced the problem that I feared worst of all. And I believed that I could overcome it.

This journey sure does have some serious highs and some serious lows. Early last week, I felt so defeated and deflated. I didn't know that this new problem had an answer, and I sure didn't see yet how I could overcome it. But today is a brand new day. I can feel the side effects of the chemo starting earlier this time -- the heart burn, nausea, mouth discomfort. My right arm is unbelievably sore from the twelve hours of infusion into it. But none of that seems to matter. Because I'm starting to see that every time we face a problem and we find an answer, I get stronger. Another quotee from the Hope book needs no background research or introduction. In fact, she's one of my Grandma's greatest heros. Her words wrap up this entry better than I ever could:

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You must do the thing you think you cannot do.
-- Eleanor Roosevelt

Last night, I had the honor of looking fear in the face. In the heat of the moment (no pun intended) I found something in myself I honestly didn't know I had. I found the courage to say, Sorry, not today, and I found the optimism to believe that this problem had a solution -- a team of skilled nurses and doctors, my family standing by my side, and my own mind and heart convinced that I could overcome it. Even with a little pain, all of that feels so darn good. And when I say good, I mean a good comparable to the taste of my warm ham and cheese croissant and box of chocolate covered almonds that I enjoyed half-way through my Cytoxan last night. Much better than the jello and chicken broth of the 24 hours prior. Again, highs and lows. I'm just thankful that somehow, I keep ending on the highs.