There Is Light In The Darkness

Where do I begin? In the year since I last posted, life has taken quite a turn. Cancer has really messed with me: 1. Lymphedema and cancer in the lymph nodes involving my left arm have caused me to become paralyzed basically from my elbow down to fingertips. I am unable to move any part of my hand. Try not using your arm for an hour and realize just how much we take the simplest things for granted. Try opening a can, putting on a shirt, driving, giving a good hug . . . 2. Many failed treatments are leaving me with fewer and fewer options. Every chemotherapy and clinical trial drugs have different side effects to get used to. It takes the body a while to adjust. Then, just when you think you've got a handle on it, scans show growth and it is time to move on to the next drug. 3. Being told I shouldn't go back to work due to the cancer drug effects, constant changes, and amount of pain medication. This has been devastating. I love my career. I love the students I teach. And I love my colleagues. Sitting home when I know I should be at work is beyond difficult. 4. Here's the kicker . . . being told you probably have about six months to a year before cancer takes over. This has obviously been the hardest pill to swallow (no pun intended). It is news that is undigestible. This news keeps me from functioning normally because I have no idea what I am supposed to be doing. How is one supposed to act? It is surreal to live in a world where everyone is going about his life normally while my life has become completely abnormal. So I've done the obvious: organized pictures, documented all the usernames and passwords, caught up on letters to Bob and Ethan, written instructions on things only a mother would know for Bob, cried a lot, prayed even more. So this is where I've been. But make no mistake, I have not given up. I truly have faith that God will intervene. My son recently asked why God hasn't answered our prayers about getting rid of my cancer. This one hit me hard. I told him He has answered our prayers in so many ways over the last nearly six years. He answered them in ways we never expected. We may not always understand the ways He is answering our prayers and the answer may not always be what we expect, but someday we will look back and it will make sense. We just have to keep trusting that God is in control. I see this even as other doors are opening with treatments. I will continue to see the light through the darkness while I am still here making memories with my family and friends. I simply ask for you continue to pray for me and my family. There is nothing more powerful and more comforting than knowing people are taking the time to pray for us.

The Most Beautiful Person I Never Met

The cancer world is a strange one. It reluctantly connects you by unfortunate circumstance to some of the most wonderful people in this world. I never met Carin in person, but she felt like a soul sister. We were connected by my sister-in-law who happens to be best friends with Carin's childhood best friend from Maine. Confusing, right? Well, Carin and I became woven together through these friendships and cancer about a year and a half ago as we were both undergoing clinical trials at Dana Farber Cancer Institute. We were email buddies, sharing gains and frustrations. We'd say we were our therapy for each other. We kept hoping our paths would eventually cross through our treatment, but they never did. Carin died at the end of May in 2013. I was shocked because in the last email exchange two weeks prior I would not have predicted the quick deterioration. She was hopeful. She said she thought things were going in the right direction. But the cancer world is a strange one. It would also claiming the life on my high school friend just a month later. In the sad irony of all this Carin's legacy lives on through the people who love her. People who, like Carin, just want to spread joy to others. Taking on new life is the Carin MacLean Foundation, helping people with cancer through some of the financial burdens that come with illness. The foundation just hosted its first annual walk-a-thon in September and was able to help an incredibly deserving family! Much to my surprise, I was contacted a few weeks ago about being the next recipient. My first instinct was to say no. As many of you know, since my diagnosis in 2010, I have been blessed in many financial ways that is seems absolutely unfair to accept anything more. But I have come to accept because it's Carin. She'd be pissed if I didn't. I will do exactly what I think she would do with any of the proceeds. Things we talked about. Carin, I kept every single one of your emails. I miss my therapy sister as my cancer is advancing. How ironic that you are still comforting me through your foundation. The cancer world is a strange one.

Back To The Drawing Board

Yes, it's been a while since I have updated this blog. I guess when other people have endured pain far worse than what I am going through, it really put life in perspective. I couldn't write after my friend Kelly died. It didn't seem right. I was given a wonderful experimental drug that has kept my cancer away for a year and a half and Kelly was gone. It didn't seem fair. A friend recently convinced me that my story was worth continuing. If nothing else, it is at least therapeutic . . . a way to praise God for what He has given me and to find strength as I continue down this uncertain path. That wonderful drug I referenced is apparently not as smart as cancer. My cancer outplayed, outsmarted and outlasted the drug. It definitely let the wind out of my sails. Sitting in the doctor's office getting the same news time after time can really start to break one down. I try to focus on the positive (as everyone says) but the negative part of the mind certainly has a way of seeping through those positive cracks. But I have hope. I will start a new experimental drug this week. It is literally and figuratively a difficult pill to swallow that I will be on medication for the rest of my life. The past three weeks I have been washing out my old drug in preparation for the next, and it has been so nice to feel "normal" again. I think we underestimate our normalcy. I honestly feel great! It is even hard for me to believe that I have had cancer for nearly five years, and, in spite of how I feel, that son of a ----- is still growing in my body. But if Kelly were me, she'd be so happy. She'd be so happy to just be with her family and friends and living her life to the fullest. So you will not catch me complaining again. I am in fighting mode and ready for the next step.

A Card For Kelly

"What would you like the card to say?" Upon dazedly calling a florist to have "happy flowers" sent to my friend's wake, the woman on the other end asked me this question. I immediately envisioned the 3x5 business card she was probably referring to and said, "I can't even answer that ma'am. There is too much to say that couldn't possibly fit on that card." And in my silence that followed, she gave me some suggestions, none of which seemed enough to express the sorrow I feel for what Kelly has endured over the last few months, the pain I feel for her family, the emptiness I feel for not having more time to grow our newfound friendship, or the sense of guilt that has settled deep in my gut. In my most recent cancer recurrence, the woman who had quickly become my biggest Nisky cheerleader was, in fact, dying of cancer herself and had no idea. It is unfathomable. The glowing and seemingly healthy woman who celebrated with me three months ago when I was gifted a car is gone. It is an indescribable pain mixed with confusion, yet there will never be an answer. So, the card reads simply: My thoughts and prayers are always with you. It seems cliche. It seems common. But those eight words could not be any more true. Since that shocking day she told me of her diagnosis, I have not stopped thinking of her. I will think of her until the day we meet again. Every day, multiple times a day, I would pray. I will keep praying until the gates open up and I see that beautiful smile again. As difficult as it all is to understand, I am confident that it was no accident that God had woven our paths together again. I will never forget our last time together. I will always smile when I hear "Dancing Queen" and see "happy flowers" and eat freeze pops. You are forever in my heart, Kelly West Pfaffenbach.

Losing Battle Nonsense

I apologize in advance if I offend anyone with this post, but I hate the phrase "lost his/her battle with cancer". If I end up dying of this wretched disease, I ask that whomever writes my obituary kindly leaves this phrase out. Cancer is truly a battle. Every day people with cancer wake up, put on armor and gear up for whatever challenge lies ahead: doctor appointment after doctor appointment, surgery, recovery, radiation, chemo, side effects, physical pain, emotional pain, mustering up strength to deal with their own diagnosis or prognosis all while trying to make everyone around us believe everything is ok. We fight this battle because cancer gives us no choice. We fight this battle because we want to see our children grow up. We fight this battle because we want to live here on Earth and make a difference in people's lives and leave a legacy, as cliche as it sounds. We fight this battle to show God that we trust Him, and when the battle is over, we don't lose. Cancer never wins. We win and the prize is eternal.

"I have a fighting chance until I'm gone." -Rhoda

A terminal diagnosis is frightening. Back in December my doctor said, "The cancer has metastasized. You are no longer curable, just treatable." Once the shock began to subside, then the pain of all the milestones I will miss came flooding to the forefront--drowning me. I was told the average Triple Negative Breast Cancer patient who has metastatic disease lives approximately two years. But, at the risk of sounding conceited, I've always considered myself to be somewhat above average in determination. This three-year cancer rollercoaster has certainly put me to the test, but I'm scrappy and I have faith. No super-intelligent, triple-doctorate-earning, socially awkward oncologist can take that away from me. Three lesions were found in my chest wall in that December scan. Although slight in size, cancer is cancer and metastatic cancer only means one thing . . . the clock is ticking. I felt torn. Should we just go with chemo or take a chance with a clinical trial? Since the past attempts at chemo, radiation and surgery clearly did not deter this cancer, I felt led toward the trial. But was quickly shut out. A few weeks later, miraculously, a spot opened up. One spot created by God--for me. The upside: the drug was having positive results in shrinkage. The downside: I'd have to travel to and from Boston weekly at first then every three weeks for as long as it was successful. The upside definitely outweighed the downside. Fast forward seven weeks: hotel costs ($1500), gas ($3000), tolls ($100) today's scan results (PRICELESS) Get this: Not only did the lesion in my left lymph node shrink nearly 20%, but the other two lesions in my right internal mammary lymph node and right pectoral lymph node are GONE! That is correct, folks . . . GONE!!! There is only one answer. The answer is prayer. God has been in every detail. And although I have had moments when I start to lose hope, He brings me back. Every time He brings me back. I know I am not cured. But I am not dying of cancer. I am living with cancer.

In Loving Memory . . .

I took this picture almost three years ago. It was an "Adventure Friday" summer day with Ethan. The adventure of the week was hitting mom's old stomping grounds. First stop: Rosendale Elementary School to what I referred to as "The Most Awesome Wooden Playground ever!" Only, to my surprise, upon turning into the school, it was gone. Major letdown. However, my disappointment was quickly replaced with joy at what stood in its place . . . The Awesomest Playground EVER! We both gasped at the most incredible display to ever grace school grounds! Ethan speedily ran ahead to sample the mini Disney World. My feet were greeted by a brick walkway with various names of families who probably donated large sums of money to build this wonderland. One name, however, stood out. Joan Keating. Not just Joan Keating, but "In Loving Memory" of her. Instantly, a wave of sadness soared through my body and my mind flashed back. 1982: As an awkward 7th grader with large circular-framed, tinted glasses that donned my initials in the lower left-hand corner, I decided to give Pop Warner cheerleading a try. I remember being in awe when three older high school girls walked in to help coach this Junior Midget. Joan Keating was one of those girls. Smiley. Peppy. Sweet. Vibrant. Beautiful. Joan Keating was the cheerleader I hoped to be when I got to high school. Only, I did not continue to pursue cheerleading after that year. I was bad at it. But Joan Keating left an impression on me. When I was a freshman, she was a senior, and I was still in awe. I never "knew" her, but when I saw that brick on the walkway I "felt" her. I took the picture. I felt the need to know what happened to her, so I called some high school friends. I found out she died of cancer. A sad realization. It stuck with me. Just last week I came across this picture again and, I don't know why, but I felt a need to find out more. I googled her and found her obituary. She died of breast cancer. She left behind a husband, four children and a huge family ten years ago. She fought hard, no doubt with the spirit of world class cheerleader. In loving memory of a fellow Niskayuna Silver Warrior I will not soon forget.

Bucket List

Do a lot of people have bucket lists? I guess one could serve as a double edged sword. Don't get me wrong, I like the idea of having lists. I am a list girl. I like the feeling of accomplishment. I am an accomplishments girl. But do I really want the pressure of achieving a random list of outlandish feats at a time when outlandish feats might be difficult to accomplish or is that the challenge I must put forth to myself? So I sat down to think of all the places I want to go, all the weird food I want to sample, and all famous people I want to meet. But my mind kept coming up blank. My husband always says he feels bad that we've never "done" anything, but I laugh because I think we've done a lot. No, we've never been out of the country. No, we've never taken up ballroom dancing. No, we've never been on The Amazing Race. But that's not the kind of girl I am. I am the girl whose favorite vacation growing up was a long weekend at Saratoga Lake in a rented, musty, mosquito-filled cabin with no television. It wasn't about the vacation, it was about having both my parents and my sister's undivided attention for those few days. It is truly my most favorite childhood memory. I am the girl who backed out of a Chicago trip with her six best friends from high school because my breaking heart wouldn't let me leave my six-month-old baby without his mother for a few days. I feared being in a plane crash. I feared selfishly leaving my family and not being able to return. I am the girl who gets anxiety when her husband and son are out for some dude-time because I feel left out and just want them to come home. And now I'm left with a jealous feeling that they will have their whole lives together and I will be left out. So this list is plaguing me. It should be grand! It should be make headlines! It should be featured on Ellen! Still drawing a blank. This is all I've got: My Bucket List 1. Go to Disney . . . this is actually in the works! 2. Renew my wedding vows for our 15th wedding anniversary this summer. 3. To Be Continued . . .

Time

I used to look forward to "alone time" or "mommy time", but today I just find myself alone with too much time. I'd like some "family time". I want to keep them close by, watch them wrestle , listen to them laugh, hold them every minute of every day. It's been two weeks since I found out cancer is back for a third time and now time has become even more precious. It's all about time. Time to put on a smile, so no one feels sad. Time to ask family and friends to pray for a miracle. Time to get my gloves back on and fight like hell. Most importantly, time to protect my son from this news for as long as possible. There's never a right time. Until then, we will continue with "Lego time", "dancing in the kitchen time", and "snuggle time" . . . my favorite time.

Positively Negative?

It's hypocritical to write in a blog I purposely titled "positiveforbreastcancer" two years ago when I have not been feeling very positive over the last few months. The honest truth is this recurrence has left me feeling negative just like the triple negative breast cancer that has invaded my lymph nodes and tried to infiltrate my sternum. It is hard to find positivity when I know what I am up against this time around. It has been a much more emotional diagnosis. A much more private one. That is, until I heard from Janet. I haven't seen or spoken to Janet, the super intelligent, friendly, spitfire-of-a-gal who lived across the hall from me at Stony Brook, in about 25 years. Today she made me feel like writing again. Any cancer diagnosis sucks. A cancer recurrence sucks twice as much. It's like you lost the phone-a-friend question in Who Wants To Be A Millionaire and all your lives have been sucked up. You've got to make the decision that you know could cost you. That's about where I am. Allow me to back track a bit. Thanks to God, I've had a successful surgery that removed all the cancer. I am currently undergoing radiation. Next step, Boston's Dana Farber Cancer Institute to hear about why three different doctors there feel three different ways about my chemo treatment. It's one of those situations where chemo will be used to possibly catch any of those nasty microscopic cancer cells that still may be floating around my body waiting to pounce. Key word: possibly. But that is very negative of me . . . or is it? I have always been a realist. Practical. I need to know all angles even if they are sharp. I do believe I am tough. Clearly, God made me this way for a reason. I so foolishly thought all of my prayers every single night since I was first diagnosed went unheard, unanswered. But I am practical and a realist. I know God answers prayers in His own time. He was still trying to teach me something. And thankfully, He has surrounded me with my absolute gold medal support team in every area of my life. Luckily, it is tough to be negative when surrounded by such positivity.

Me, Just Slower

A year ago my muscles didn't work. I wrote about not being able to run 200 yards. A year ago I was winded walking up the stairs. Today I ran 3.2 miles in the Susan G. Komen Race for the Cure. What an invigorating feeling to have come such a long way. Today I felt like I had finally come full circle. That I am back to my old self. Ok, maybe a little slower version of myself. But it still feels great. This is not a cause I will ever abandon. It will continue to be on my mind every single day, no matter how good I feel.

Thank you for supporting me over the last 17 months!

Deja Vu

What a familiar place I've been in over the last week. One day after rejoicing in my one year milestone, I was lying on the doctor's office table having another biopsy. A small lump appeared a couple of months ago. Yes, even after your breast tissue has been removed, you can still get breast cancer. I sat next to a woman during my 3rd chemo treatment who spoke openly about being there for her second go around just months after completing her first. Her story rang in head for the past week as I waited for the results. I timidly watched my videotaped testimony in church Sunday wondering if I was going to let all those people down when they found out I was having a recurrence. I was scared that after sharing with them how God had healed me they would lose faith in Him if they knew I wasn't really healed. That was the worst thought. I prayed for those people. So I waited. And wondered. How will my husband handle this news again? He stoically made it through one bout, how would another weigh on him emotionally? And I waited. How will I explain this to my son, who anytime he hears me talk about cancer will follow up with, "But Mom, you don't have that anymore, right?" Always looking for that reassurance. And I waited. How will my mom and dad carry the guilt and pain that they shoulder and that I am not ready to fake-comfort? My mind has raced through my prayers and anxiety. I have filled my days consuming myself with work and friends and family to fight off the worry and have tossed and turned for five nights.

Finally, tonight I can sleep . . . Benign!

Happy Anniversary

My cancer goody bag is one year old. A friend just said to me, "Well, that is not a happy anniversary." I disagree.

The First Time Is Always Scary, Mom

Standing in the bathroom, primping for work, fiddling with my wig, I realized I did not want to wear it, but was very apprehensive to walk out the door without my security blanket. I have recently been around family and a few friends headgear-free and even made a trip to Target and the mall where no one knew me or cared. But to walk through the doors of work seemed somewhat daunting. I'm still sensitive about this head, even to the point where I wanted to cry sitting at the salon watching my sister and nieces get the cutest haircuts this weekend. I wondered what everybody in that salon thought of MY hair. I know that sounds really self absorbed. But I wondered if people look at me and think, "Aw that poor woman has cancer". Maybe it is because I have gotten away with looking fairly healthy over these past eight months and had successfully shocked most students when news of my wig broke a couple of months ago. Most people forget I am wearing one because it really is an awesome wig. But the best part is that I think it makes most people forget I had cancer. I blend in. Unfortunately this hairstyle puts that scarlet letter back on my chest. Outwardly, it does not look like much. So maybe people look at me and think I'm sick. They return my glances with a sad face or darting eye. With the wig, people don't do that. But, I truly am proud of my new hair. It's symbolic. Inwardly, I am Rapunzel.

So, I was putting on the wig in front of the mirror, taking it off, putting it back on, all while my son stood there watching me. I asked his advice. "What do you think, buddy, can Mom go to work today without her wig? It will be my first time." He said, "The first time is always scary, Mom, but then it's ok. Remember when I went head first on a sled for the first time? I was scared, but I did it and now I'm good. And if anyone laughs at you, just report them to me." I knew he was right. I knew I just had to do it. But even as I got in the car and started driving I felt so naked, so exposed. I took Ethan's advice and went head first into work. It was ok. Nobody laughed. Nobody to report.

Breast Regrets?

Disclaimer: If you don't want to hear about my nipples, stop reading.

My bilateral mastectomy with immediate reconstruction is now about six weeks behind me and I'm not sure I made the right decision. The pain from surgery wasn't as bad as I expected, the fluid draining from my body into mini turkey basters wasn't as bad as I expected and the time out of commission wasn't as bad as I expected, but I don't think I was prepared for the emotional detachment from these new space invaders. I am wondering if these lumpy, stiff blobs of silicone will ever really feel like a part of my body. Should I have chosen to forgo the implants? Some days that answer is "yes". Currently when I look at them, completely lined with scars of this disease and nipple-free, I question my desire to even consider nipples in the future. I don't know if it is because I do not care about them enough to give them nipples, which apparently can be fashioned three different ways depending on what I prefer, or if I just need to move on. I was never a fan of nipples in the first place. They can be a source of irritation and embarrassment at the wrong time. And never did I really find them to be a source of pleasure. I would have rather had someone put his finger in my bellybutton, which irritates me just as much, than to have had my nipples touched! Anyway, I am leaning towards leaving them the way they are. The scars and the lack of nipples reflect the journey. I'd rather be reminded of the journey than reminded of my breasts.

So Long, Old Friends

I think I got lucky with my breasts. I really like them. Even though I always wished they were as big as my sister's, they have served me quite well. In high school, I was flat-chested. I was recently looking at a photo of myself wearing my senior prom dress. It was turquoise with fluffy sleeves and a fitted bodice that did not really fit my bodice. Let's call it "gappy". This was all fine with me because they did not get in the way of running up and down the field hockey field or around the track, two things I was way more concerned with than boobs during those years. I was too skinny anyway and big boobs would have been weird. However, along with college came the dreaded freshman 15! And, luckily for me, most of that weight went straight to my flat chest . . . and my hips. I definitely filled out my slutty "clubbin' clothes" much better. Right, girls? Anyway, they were cute . . . until post pregnancy and I didn't even torture them with breastfeeding. I knew long before I ever had a child that breastfeeding was not something I could ever do . . . way too sensitive . . . and as much as that was frowned upon by society, and seemingly gasped at in the circle of breastfeeding warriors of 2004, I did not succumb to the pressure and my son is pretty healthy and somewhat normal. Now, ironically,those sensitive parts will no longer be a part of me, but replaced by tattoos instead. Again, ironically, something I always wanted, but not exactly the location I had in mind. Anyway, in the past six years my breasts have changed location, but still fill out a sweater or bathing suit fairly well, as long as the suit has some tough underwire. And although I uttered the idea of getting them lifted at some point, that will no longer be needed as I say 'so long' to these friends this evening. Breasts are like snowflakes, right? I mean, no two (or four) look the same, but they are all beautiful . . . beautiful parts on God's creations. I would much prefer the 40-year-old, drooping ones that God gave me now, but that was not part of his plan. So, I will go along with that plan tomorrow and tonight just remember He is in control.

Chemo Has Left The Body

I can tell it's gone because all the things I took for granted are slowly coming back. And now I am really paying attention to them. 1. Let's take my taste buds, for instance. Food has never tasted so good as it has over the past couple of weeks. Coffee, I missed you. Chocolate, I adore you. Although I have to tighten the reins on my eating habits for my health's sake, I have thoroughly enjoyed pigging out lately. However, my jeans may not agree. 2. "Unwanted hair". Of course, all the hair I didn't miss in the first place is coming back fast and oddly patterned, but I am not complaining. I shaved my legs today for the first time in a few months and it was nice. Only, Bob's razor needs a new blade. He surely will not appreciate sharing with me again. There's just something about his razor . . . I like it better. Don't judge me. 3. "Wanted hair". Slowly but surely the fuzz is darkening and looking more like hair. Bob says it is getting long. I guess compared to his bald spot it is getting "long", but I can be patient. It's my eyelashes and eyebrows causing me strife. I never lost them completely, just have vacant spots here and there. So I spend a lot of time obsessing over the growth while examining them in a magnifying mirror hourly. Eyebrows are filling in, but eyelash holes are slow to respond. 4. Energy and pain. Energy level has increased and the burning pain in my legs . . . vanished. I even ran two miles last Sunday and felt good! Joy. I feel joy from the inside out. With surgery coming up, I still feel like I am over the hump. The worst is behind me. And that is where I'd like it to stay.

Competitive But Realistic

I'm extremely competitive. A game of Guesstures turns me into a nail-biting, answer-shouting, seat-bouncing freak. Lost field hockey games in high school would leave be seething under my mouth guard and cranky for hours after. And a bad run on the track, forget it . . . devastated. While training for races throughout my adult life, although my mouth is saying, "It's not about my time, it's about having fun", my competitive spirit is screaming, "It's totally about my time!" I was broken-hearted during my training for my first (and last) marathon seven years ago, when just a few weeks before the big event, I injured my knee, causing pain that should have prevented me from going forward with that run. But there was no way I was going to come that far and not go all the way. That day it was truly NOT about my time. It was about finishing. And I did. But cried almost the whole way home from Burlington, VT in pain. Stupid, you say? Yup. It kept me from running for a long time. Last June, I decided I was ready to get back out there. A half marathon this time. Doable. Even though I struggled some days while training with my two girlfriends, when the run came, it was the best I felt in a long time. The runner's high was in full effect. And crossing the finish line with a respectable time and no injuries at 39 left me feeling pretty proud of myself. Running is important to me. A lot of people don't understand it. But I love it. There is a feeling that comes with running that is tough to explain, but anyone else who is a runner knows exactly what I mean and you are shaking your head right now.

So, this cancer thing has put a bit of a damper on any running regimen. My leg muscle have collapsed to the intense build up of chemo . . . deteriorated from the shapely, strong pillars they used to be to these jello-like logs that burn from just walking up stairs. Last week I decided to get out there and try to run a mile and get in shape before the Race For The Cure 5k this weekend. I felt great mentally, so I went for it. The minute I began, I knew I would not last. The feeling was like nothing I had ever experienced. My legs literally didn't work like that anymore. In fact, not only did they feel like they were 400 pounds each, but they couldn't even "move" like the legs of a runner. I likened myself to a woman 9 months pregnant and possibly 10 cm dilated, trying to run. It was impossible. SO after about 200 yards, I stopped. I realized running a 5k was not going to be possible. I cried. I want my body back. I want so badly to run this race with my amazing supporters, some are people who have never run before and have trained for this event. I want to run with them, to show them how proud I am of them for working so hard and reaching their goal. I want to run with my old running mates and my new running mates and my friends and family and all the people who have showed me so much love and warmth and pure, beautiful goodness through these long six months. But I can't. Tough for this competitive girl to admit, but I am just not strong enough yet. I guess I have been using that strength in other ways lately, so I can wait until next year to "run" this race when I am a one year survivor. And I will be running for fun . . . and for time :)

Rock Star? Not Me.

Tomorrow the last cycle begins: take my steroids, get my levels checked, chat with oncologist about my progress, pack my chemo bag with magazines and silly games, and pray that it's not so bad on Friday. In my head I'm thinking, "Toni, how can it be bad when it's your last one?!" But having now experienced the dreaded "cumulative effects" I was warned about in May, I have some trepidation. Seriously, my first three treatments left me feeling like a rock star! I could not believe how well I was handling it all. Sure, I had a few days where I felt drugged and unlike myself, but I would rebound quickly and look forward to getting the next one behind me. Heck, I even ran a 10k the day after my second treatment. Rock star.

But this rock star has fallen. I feel like I was misrepresenting chemo. I mean chemo is supposed to make you look thin, pale and sickly, right? But the only thing different about me was absent hair and maybe some dopey eyes from time to time. Until treatment 4. And that was nothing compared to 5, the one I have still not fully recovered from with 6 only two days away! So the face (my face) of chemo has changed. In the three weeks between treatments, my body has transformed. The "face" of chemo has changed for me over the last month. Want to know the truth about chemo? Day 1: infusion. Day 2-5: drugged feeling, need for sleep and lots of it, but muscles so sore it is difficult to get comfortable to actually enjoy the rest, inability to get out of bed or off the couch in the morning, opening eyes even hurts, interest in food dwindles as the taste of metal takes over, mouth becomes dry and unable to be refreshed, certain foods completely gross me out (dairy products and coffee), while others are a staple to nutrition (watermelon and grapes).

Day 6-17: I am not becoming sickly and thin because the steroids have made me retain water, so my complexion is plump and maybe I even look a little bit younger as my wrinkles are somewhat filled in. However, my pants don't fit because that water I am saving like a camel has appeared in my legs. My cankles have turned into thankles and feel like they could explode if I make one wrong move. The taste in my mouth, unbearable at times, have to keep brushing my teeth. Still tired, but outdoing the fatigue is the extreme muscle burning in my legs even from walking up and down stairs. Now, I have to admit, when I had my chemo class months ago I watched a video of people discussing how chemo affected them. One woman said she was winded just making the bed! I turned to my husband in shock. I could not imagine that could be possible. Even though I have not gotten winded making the bed, I understand. I totally understand.

Day 18-20: Coming around! Just starting to really taste things again. Energy level is increasing.

Day 21: Infusion 6. Yup, the last one. So, I am thrilled, elated, proud, emotional . . . and dreading the next 20 days, especially as school starts on Day 5. Can't let my students down. Gotta be "on".

Over the past several days I have thought a lot about people I have met through this chemo journey, people who have had to endure chemo a lot longer than I, people who are having setbacks, people who are facing cancer a second time. It breaks my heart. To have had chemo behind them, celebrated, had their hair grow back only to find out months later the cancer is back? Devastating. I can't complain, not out loud (well, maybe only to my husband). I've only had to endure three and a half months, six total treatments, three of which left me feeling like a rock star. I do not need that title. Chemo has humbled me. My body has given in but not my mind. I am climbing my way back each day to the woman I remember pre-diagnosis. There are so many people that go through so much more than I, so much more. My journey has been short in comparison, my effects . . . minor. And although I will be tearfully celebrating Friday, I will be taking with me the stories of every woman who filled with chairs next to me and shared the good, the bad and the ugly with me, a complete stranger, but a sister to any woman with breast cancer. Forever on my mind . . . the women who have endured and keep enduring this disease. They radiate strength. They are the rock stars.

When Nothing Is Happening

My son talks incessantly. Really. He can't stop. It is a constant stream of thoughts and ideas, a running narrative of absolutely everything or complete nonsense. He can talk about very intriguing things like what "webbins" Mario and Luigi would use in a battle with Darth Vader and Darth Maul. He can convey his life plan as if it is happening tomorrow: to own his own Silly Bandz store, not get married, but adopt a little girl and homeschool her, so she can work at the store and because he can teach her lots more things than school. Or he can just ramble endlessly. The mean kid at school might want to turn to him and yell, "Shut up for five seconds!" But I'm his mom, so I can only think that in my head on these long summer "no-plans" days.

So last night I decided to treat him to a stargaze while Dad was working late. We put on our jammies, squirted on some bug spray, searched for our favorite "Magic Blanket" and headed across the street to "Cemetery Hill". Now, in my mind, stargazing is supposed to be a calm, quiet, peaceful look at the stars. Apparently, in Ethan's mind, it was an excuse to run around like a lunatic howling at the moon and creating the most nonsensical knock-knock jokes, which then put him into a fit of fake laughter. "This is so fun, Mom. We should do this more often." Look, I'm not totally insensitive. I love that he was having fun, and I did a little real and fake laughing myself. But this was not in my mind's eye when I imagined our evening together. So, I sat him down on the blanket and asked if we could just be quiet and watch the sky. Sometimes, as a parent, I will say something to Ethan and then be so grateful no one else heard it because it made no sense whatsoever, but at least HE didn't know. Last night was one of those moments. In my frustration I said, "Ethan, sometimes the best moments in life are when nothing is happening." It is not profound in anyway and definitely needed some explanation. But, upon explaining, it even became more clear to me.

Amidst all the summer hoopla, when I think of my best summer moments two things come to mind. First, it doesn't get any better than waking up each morning to a kiss on my bald head accompanied by a "Good morning, Mommy". Next, one afternoon I am standing in the kitchen sneaking a chocolate chip off the top of a magic bar and I hear "Mommy?" with a slight panic in his voice as if he is not sure where I have gone, yet I am only a few feet away from him. I return with a quiet "Yeeessss?" And since he really doesn't need anything, just wants to make sure I am close, and the best part is I know exactly what he is doing, he replies with, "I love you." Best moments.

So, when we finally sat still and listened to the crickets and smelled someone's fire burning and made wishes on the stars, even though he wished for Star Wars Mighty Beans, he also wished we could do this every night. Best moment.