');document.write('Update: Wednesday, July 11, 2007
For those of you who are new to this site, welcome. This is a blog that my good friend and business partner, Fritz Miller designed in order to keep people updated on my condition. In order for these entries to make any sense at all, you\'ll need a little background and a roadmap of sorts. Here is an entry from my personal journal that details how I discovered the cancer in the first place.
"Not Perfect"
Well, people, it has come to this. I am breaking out the early journals. The never-before-seen angry ones. Too many people are telling me that I don’t have to always be strong and perfect. I’m here to let them know that I’m not. Perfect, to me, is a four letter word. So, here’s proof that I’m not…
Many of you don’t know the full story about how I was diagnosed, so let me start by giving you a timeline.
Spring 2005: Spent three days a week at a sports rehab place (hi Brad!) to work out what we thought was carpal tunnel syndrome and a pinched nerve in my neck.
Mid-April: I was training for the Peachtree road race and started having chest pains and wheezing after short runs (I hate running, so I thought that was normal). The wheezing then continued into each night and I couldn’t sleep. Went to Dr. He thought bronchitis, put me on Bioxin and Prednisone. Kept running.
Mid-May: I finished the medicine but wasn’t feeling much better. I was so tired every afternoon that I would have to nap for an hour after school. I started having more trouble at night. I would wake up and couldn’t swallow. It was the same feeling as when a pill gets stuck in your throat, except nothing would help it go down. Went back to Dr. This time, she said it might be a recurrence of Asthma. Put me on Advair (inhaler) and Prevacid (for acid reflux). As I was leaving the office, she caught me and gave me an order to get a routine chest xray “just to be safe”. Kept running.
First week in June: School let out and the kids were in day camp. Hal was in New York on business. Monday-Wednesday I cleaned my school room and started working on the workbook to accompany Hal’s ScreamFree Parenting. Kept running.
Thursday, June 2: I was feeling a bit better, but still wheezing. I decided to go to the imaging place for that xray, after all, “just to be safe”. People have asked me, what is it that made you go? Honestly, I like to think that it was God. It’s not like I heard an audible voice; I merely found myself there for no real reason. Before the xray, the tech told me not to expect to hear from my doctor until next week about the results. After she took the first film, she called in her supervisor to “check on her film” and then sent me on my way. One hour later, a message was on my cell phone from my doctor’s office saying that they needed to talk to me. I literally was running, so I didn’t get the message until after 4 when the office was closed.
Friday, June 3: I was sitting at Starbucks writing and staring at my cell phone. When the time read 8:01, I called and talked to a nurse. Her words, “There’s a mass in your chest and we need you to get a CT scan…today.” I might have fainted… or cursed…I don’t remember. I do remember driving to their office to pick up my order and calling Mom. It surprised her because at that time, I never called. We now speak every day (hi Mom!). I had to pull over because I was crying so hard. I was terrified and alone. She comforted me by telling me all of the innocuous things it could be, even though I’m sure as an R.N. she knew something was terribly wrong. I then called Hal. The reason I waited was that he was on the biggest business trip of ScreamFree’s existence and I didn’t want to worry him needlessly. But at this point, I needed him more than I could bear and I called just to hear his voice. He offered to fly home right away, but I wouldn’t let him. Sunday would be soon enough. There was nothing anyone could do at this point. I called my lunch date for the day, Bev Dowdy, and instead of a friendly lunch, she got way more than she bargained for. She came with me to get “my cat scanned”. What a friend. We then went to lunch and tried to make sense of all of this. Same routine. Before the tech scanned me, he said that my doc would call me sometime late next week. Kept running. And cut the grass. And played singles tennis (against Margaret Washburn – hi there!).
Sunday, June 4: Hal came home and we held each other and spent hours on the internet trying to guess what could be wrong with me. We also had loads of fun quoting Kindergarten Cop and saying, “It’s not a too-muh.”
Monday, June 5: Hal goes to work to keep things normal and as soon as he leaves, the phone rings. It’s the doctor’s office. They won’t tell me anything over the phone (never a good sign) and say that the doctor needs to see me at 4:30 that day. 8.5 hours later. I called Hal and he turned the car around. The kids were having breakfast. I hung up the phone, ran into my room, and cried until Hal got home. Then I cried some more. He got on the phone and calmly told the office that we’d be coming in right away and they could find room in the schedule to talk to us. We met Dave Markert and son halfway to drop off the kids. There was not a lot of talking. Dave Jr. gave me a death grip hug as he put the kids in his new car. I started crying again. Dr. met us and gave us the report. There was a tumor in my chest that measured 13x11x8 cm. Roughly the size of a cantaloupe. It was behind my sternum and more tests would be needed to see what it was. He referred us to a pulmonary specialist because the tumor was encasing a major artery and compressing my left lung. He didn’t really know what to say, so he blew smoke our way. His words, “I’m 99.9% sure it’s not cancer.” Yeah. Stopped running.
Tuesday, June 6: Met with Dr. DeMarco, the pulmonary specialist. He was the first to show me the ct scan of my melon. It scared me and I started crying right there in the office. He told me that it was likely a thymoma or lymphoma and he ordered a needle biopsy to find out which one. It was then that I asked, “So, this is probably cancer?”. He gravely nodded his head. I will always appreciate Dr. DeMarco’s frankness and candor. He was the first heath professional (of many I was to meet) that seemed to take me seriously and wasn’t afraid to tell me that something dreadful was wrong with me. From there, I went for bloodwork and preop registration. Hal called our families and both of our mothers made arrangements to come in to town the very next day or two.
This (finally) brings me to my journal entry. From this point on, I started writing everything down and I’ll share that with you. I can’t promise that it’s all roses and scripture verses. It’s more Job-like and tumbleweeds. I will print it in its entirety (I will use either cartoon curse words or British versions so as not to offend) piece by piece. Here’s day one:
6/8/05
So. Here I am sitting up alone listening to the hum of my quiet house the night before my biopsy. Now there’s a sentence I never thought I’d see myself write..
There are so many things I feel and don’t feel right now – it hasn’t quite sunken in – yet it feels like I’ve been dealing with it a long time. I have a tumor in my chest. It is roughly the size of a small melon and it is surrounding a major artery. Other than that, you’d never know anything is wrong with me. I want to keep this journal as a record of events/keepsake for future reference/avenue for me to VENT/and overall safe place for me to be. I’m afraid that if I don’t, I’ll tuck it all away and it will eat at me worse than any tumor ever could.
I’m feeling pretty positive right now until I look at myself naked in the mirror and see it. I can see where the bloody melon is camping out in my chest. It makes one side of me bulge. It is red and hot to the touch. I can see all the veins running through my chest. It is hideaous. I am pissed because this thing might cause me to have a huge scar down the center of my body. MY BODY!!! The one that made it through two babies without a single stretch mark. The one that looks better at 32 than it ever did at 16. &(*&$^@&&@#(*@^%^&$!!!!!
Silly, huh? But honest. I’m mad that I can’t play tennis. I’m getting really good and I love it and every day that I’m dealing with this CRAP is a day off the courts. I am too mad now to sleep or read, but for some stupid reason there is a Bible next to me. I really would rather not look at it, so I won’t.
So that’s it. Day one of my angry journal. See, not perfect. So, for those of you who worry that I’m not really dealing with the sadness or anger, please know that I am – I just don’t usually publish those entries…they need too much cleanup.
Peace, Love, and Imperfection,
Jenny
If after reading this, you for some reason want to read more, just scroll to the bottom of this page and go to archives. Scroll down again and there you are...at the beginning of a long story. I hope that in some way you benefit from this site. I know that I have.
');document.write('Update: Sunday, November 19, 2006
So, it’s been almost a year since I last posted on this site. I didn’t realize that until tonight when I finally typed in the address after staring at the computer screen for approximately two hours. (Thanks, Dot Shaw). Why have I avoided it so? I don’t know. I tell myself it’s because I don’t have the time. I am busy now, with work, school, tennis, life. Funny how I still have time to watch reruns of Scrubs. What a show, by the way. I love how funny and irreverent it can be, all the while, delivering some incredibly touching and powerful messages – it avoids cheese, which I respect. I think I have a crush on Dr. Cox – or maybe I just secretly want to be like him – someone who under-commits and over-delivers.
I digress. Which is exactly the point.
It is time to face the site.
For those of you who are curious, here’s the cancer update: I am in remission. I finished 24 rounds of radiation last January and have been checking in with Dr. J every three months. So far, so good. In fact, things really couldn’t be better. I recently had a CT scan which showed no signs of cancer and even the residual scar tissue from the tumor is shrinking. She did a full set of blood tests and all is well there too. I am now a picture of health. My weight is back to normal, I am playing loads of tennis (go Riverbrooke-to city finals!!), and I feel like a million bucks….which is weird because I also feel pretty rotten.
I am really disappointed with myself, actually. I should be a new person. I should be more alive and kind. I should reach out to others like so many of you who reached out to me when I needed you. But I can’t. I don’t know what it is. I should be shouting from the rooftops that I am cured, but for some reason, I want to pretend like it never even happened. Why is that?
I think I know why. His name is A.J. Donohue.
A.J. is an 18 year old kid who found himself battling bone cancer while others his age were choosing colleges. My good friend, Dave Markert, introduced me to A.J. through something called the CarePages. Here, I got to know this brave kid and follow his “journey”. Actually, I got to witness a wonderful child suffer a horrible fate. He died about a month ago, but he maintained a positive attitude throughout his whole ordeal. I think that I feel strange talking about my experience with cancer because I made it and people like him didn’t. In a way, I feel arrogant. Why did I make it and not him? Why is my cancer in remission, but not his? Did I fight harder than him? Did more people pray for me? Does God love me more?
I think the technical term is “survivor’s guilt”. Well, I’ve got a bad case of it. If I’m not careful, it might make me more sick than the cancer ever could. So here’s my first attempt at letting go of that. I am writing this because of all of you out there who need to see it. When I was sick and in need of inspiration, I found people who beat the odds. They gave me something to latch on to – something to strive for. It’s time that I start to become that person for someone else – it’s time to step out of myself and start helping out.
I guess this website is a decent place to start.
');document.write('Update: Tuesday, December 6, 2005
Hello friends and family! I took the months of October and November off from writing and visiting the doctor and now that I’m back into the swing of both, I thought I’d check back in with you all via this website.
I am still in remission, but I am currently undergoing radiation therapy to knock out the residual mass that is in my chest. The latest research shows that without radiation, there is a 20-40% chance that the collection of lymph nodes (i.e. tumor) will turn cancerous again. With radiation, my doctor tells me that chance shrinks to about 2-3%. No brainer. Radiation it is.
I started therapy right around Thanksgiving and I have plenty of new material that I promise to share with you all soon. I was in denial about further treatment during these last two months, which is why I did not update the site. I think I felt that if I pretended that the site didn’t exist, maybe the cancer wouldn’t either. So much for that theory.
Here’s the latest installment in the cancer chronicles, which ironically, has very little to do with cancer…
“Give and Take”
I’ve been “at home” now for almost three weeks. I spend my time napping and shopping, reading and exercising. I bake cookies and fix broken Christmas ornaments. I reorganize photo albums and make lists of things to buy. Ever since I starting working, it’s what I thought I wanted. So, why am I completely miserable? If this type of life doesn’t make me happy, then something is really wrong.
Ok, ok, maybe it’s the cancer. Or the radiation treatments. Or the daytime TV. Sure, that’s all a part of it. But I really think it goes much deeper than that. I miss people. I miss being busy. I miss mattering. Is that a word? Even if it’s not – it IS a feeling. I’ve gone days and days without interacting much with the outside world. The only voices I hear belong to Katie and Matt. So I decided to get out – do some Christmas shopping – get into the holiday spirit. The very spirit that always seems so elusive because, in my mind, I never had the time for it.
So I went to Kohl’s. And Target. And Walmart. And the mall. As my pocketbook shrank, I expected my mood to soar. I was doing what I always wanted. I was dropping my kids off at private school and spending the day spending money. Sounds too good to be true? It is. Actually, it’s too good to be real. Halfway through my buying bonanza, I started to feel something. Something empty. Numb. I started to realize that all I had done – ALL DAY was to consume. I consumed coffee – gasoline – air – breakfast – more gasoline – clothes – toys – goodies. The more I got the less I felt. So I took a break and tried to plan out the rest of my week. More of the same. What a rut! What a bore! I’ve been feeling this way for a while, but I’ve been hesitant to put words to it. Am I really happier working my fingers to the bone without a minute to call my own? Or do I just feel more important that way?
Maybe it’s deeper than that. When I really look at the past few weeks, there are a few key elements to my life that have been lacking. Sustained human contact, for one, – outside of my family. Don’t get me wrong, my family is crucial to my happiness. But there’s something to be said for laughing with friends and working with others. I mean, seriously, I have no one to talk about with Hal these days. Who am I going to criticize or make fun of…me? Boring!
The other part of life that I miss is something I always did, but never paid attention to before. The act of creating. Actually sitting down and doing something in a unique way that only I can do. You can’t do that while strolling the aisles at Target. In fact, I think that actually sucks the creativity right out of you. I literally heard life leaving my body as I circled the toy section for the last time yesterday. I blame Barbie. She had a knowing smirk on her tilted head – and I never trust anyone whose hands always stay in the same position. She’s definitely hiding something.
When I am creating something, I feel alive. There’s a surge, a rush, that I get as ideas start to flow. It happens when I think of a new way to teach a poem. When I come up with a connection between the words of a dead white guy and the lives of tomorrow’s future. When I write things like this. When I draw. When I play piano. When I think.
That’s what’s been missing. That’s what I crave. Not the busyness or the feeling of importance – although if I’m totally honest, it’s nice to feel needed – but rather the act of being ME. The act of contributing something to this world besides my mighty dollar and my exhaust fumes. The act of connecting with myself and society at the same time.
So, as a promise to myself, I will do something creative at least once a day. And while I’m at home, I will try to enjoy the peace and quiet. All too soon that will be an impossibility. Now I have to get back in the car and head to Walmart for another bout with consumerism. Presents to buy and such… But this time, I’m steering clear of the toy department and heading straight for arts and crafts.
');document.write('Update: Sunday, October 2, 2005
“Finally”
I seriously doubt if anyone visits this site anymore since I haven’t posted in ages, but in case there are any folks out there in cyberspace who are curious….I got really good news this past Friday.
I finally had the elusive PET scan and saw the doctor to get the results. She walked in the room with a big smile on her face and told us that both tests (bone marrow biopsy and PET) came back completely normal. No cancerous activity. None. Nada. Zip. Hal immediately hugged Dr. Jay and I just sat there in a haze. I made her repeat everything and then asked her…”So, I really have no cancer?” She laughed and told me again, in no uncertain terms, “You are in remission. You have no cancer in your body.”
I jumped up and hugged her and she actually started crying. She called me her champ and told me how proud she was of me. I feel so blessed to have met Dr. Jay; I really trust her, with my life, literally, and consider her a good friend. In a very strange way, I will miss seeing her on a weekly basis. Well, not really.
So what’s next for me? Good question. We don’t really know yet. She still wants me to meet with a radiation oncologist to discuss options. It seems that lymphoma is often treated with chemo and radiation in order to discourage relapse, but she seemed unsure if I needed it at this point. So, I am doctor free for at least one month.
Physically I am feeling really good. My body doesn’t ache nearly as much and food is starting to taste normal to me (uh-oh). I don’t need two naps a day anymore and I don’t get winded just by walking up the stairs. In fact, I am back to exercising and playing tennis (wish me luck on my match today!).
Emotionally? Well, that is another story. It has been a month since my last chemo treatment and since then, I have been surprised by both depression and anxiety. I thought that everything would magically go back to normal as soon as I finished, but of course, that is not the case. Recovery from treatment is a really slow process, and I’m not good with things that move more slowly than I’d like. Raising a child who was born with molasses in the veins rather than blood has been a particular parenting challenge for me…but that is for another article at another website.
Another reason for the depression, apparently, is the end of treatment itself. Weird? Yeah. But true. The chemicals have a cumulative effect not only on your body, but your hormones as well. Also, treatment and getting through it has been my life for the past four months. It’s a big shift in priorities now that I’m finished, which is strange, to say the least. Things this past week have been much better. It helps that the drugs are working their way out of my system – Dr. J said it can take up to a year – and I am weaning myself off of some of the meds I take at home. I definitely have more compassion for those who struggle with depression issues now, though. It really is an awful thing.
People keep asking me why I haven’t written in so long, and I’ve spent quite a while thinking about it. One reason is that I’ve been incredibly busy at work, but I think there’s more to it than that. You find time to do the things you want. So what’s the reason? From the moment I heard the words remission, I’ve wanted to put this whole thing behind me. I wanted to just be me again, not “Jenny the inspiration” or “Jenny the brave one.” That’s a hard role to play, I’ve learned. So I’ve ignored my journaling. It has been my own little rebellion. I know, that\'s about as mature as a two year old holding his breath to get his way, but that\'s the truth. Then I realized that doing so was not fair to the hundreds of people who really do care and have been following my progress and praying for me. And pretending that it’s all over is not fair to myself, either. I technically still have cancer – it is just in remission. I won’t be considered cured until two years have passed without a relapse. I have wanted to ignore that fact and be totally healthy again. So there it is. My apologies to those of you who have been in the dark for awhile. I guess I have been too.
Peace, Love, and Antidepressants,
Jenny
');document.write('Update: Saturday, September 10, 2005
“The Big R”
I haven’t written in a while because I’ve been a bit paralyzed by the idea of not knowing exactly what to say. I finished chemo last Friday and everyone has been congratulating me ever since. I have been reticent to feel relieved because we’ve been waiting on a CT scan to see if chemo really worked.
Well, yesterday at 2:30, I had the scan, and in Dr. Jay’s own words, I have achieved a “complete response”, which is the new term for remission. The mass has shrunk between 90-95% and she is confident that the remainder is simply a collection of lymph nodes and is not cancerous. I still have to undergo two more tests next week to confirm that things are as good as they seem, a PET scan and another bone marrow biopsy (which Dr. Jay claims she can do “without pain”…at this point, I’ll believe anything she says…we’ll see). According to her, I couldn’t have responded any better to treatment. There is still a chance that I will have radiation, but it would only be as a precautionary means to ensure that it never returns. We will meet with a radiation oncologist after my next round of tests to weigh the options. The last thing the doctor said to us as we were leaving the office was, “You can stop worrying. Just go home and take care of yourself.”
I am having difficulty writing this. I keep looking at the last few sentences and smiling – I can’t really believe it yet, but Hal keeps telling me that I heard her correctly … remission. It’s strange, I don’t feel any different physically than I did yesterday. I have been fighting a cold/sinus infection for almost 3 weeks now and the cumulative effects of six rounds of chemo have left me with little in the tank, but everything is different this morning. I can now say with belief that I am FINISHED with chemo. Before, there was the nagging doubt that the scan would indicate that I needed another round, or worse, a stem cell transplant. Now, I feel like I could walk on air. Well, to be honest, I still feel pretty crummy, but metaphorically speaking, I am on cloud nine.
I know that this is not the end of my “journey”. It is one that I will be on for the rest of my life. The worry and anticipation of yesterday will be repeated many times over as I continue to be monitored, but I am more than ready to start that leg of the trip. It beats being hooked up to poison any day of the week.
It feels trite to say that God is good at this point. He always has been. But I must say that I feel His hand this morning more than I ever have. I am humbled by the many people across the world who have been praying for me. I wholeheartedly believe that you all have made a difference in the outcome of my treatment. Over the past three months, neighbors, friends, family, students and complete strangers have pulled together to support me and my family. I have received cards and flowers, gifts and dinners, favors and calls almost every day since I was diagnosed. I have been overwhelmed with kindness. Everyone has demonstrated God’s kindness to me in such a real way that I have trouble comprehending it all. Hal and I talked about it yesterday. We intend to pay it forward as much as possible and bless others as you all have blessed us.
Peace, Love, and The Big R,
Jenny
');document.write('Update: Sunday, September 4, 2005
“Freedom”
I did it. 6 rounds of Rituxin, 6 rounds of CHOP, 12 weeks, 3 months, 1092 pills, 36 trips to Dekalb Medical center, and 21 bags of fluid later, I am finished with chemotherapy. There were days where I imagined typing that sentence, but I was never sure if it would come to fruition. Well, it has.
My last chemotherapy treatment was Friday, and I made it through with flying colors, despite the raging cold/sinus infection I’ve been battling for over a week now. My nurses hugged me and said that they’d see me in the grocery store or on some random Carribean Island (I’d prefer the latter). Dr. Jay was just as optimistic. She wants to schedule a procedure to remove my port, which I took as a very positive sign that I will not need another round of chemo. I am supposed to go back in on Friday for the first of three tests to determine whether or not I’ll need radiation. This will be the CT scan and I should know the results that same day. As much as I’d love to hear the word “remission” after all of these tests, I am prepared for the alternative.
The alternative will mean 5 doses of radiation per week for 4 weeks to kill the remaining cancer cells. The good news is that my hair will grow back through (in fact, I already have a miniscule amount of peach fuzz) and the side effects of the treatment are not nearly as severe as the ones from chemo. For a while, I’ve been upset about this possibility, but all of the sudden, with chemo behind me (boy that sounds good) I KNOW that I can tackle anything. I am still nervous about these upcoming weeks. The whole “scan and wait” ordeal is not pleasant, but I am reminded of a line from The Shawshank Redemption when I get to feeling paralyzed by the waiting- “You either get busy livin’ or get busy dyin’”
So until I find out and even after then, I plan being busy livin’. I just don’t like the alternative.
Peace, Love, and Freedom from chemo,
Jenny
');document.write('Update: Wednesday, August 31, 2005
"The Flood"
As I write this, thousands of people in New Orleans and the surrounding areas are struggling to survive. I watched the news last night in disbelief. The Superdome looks like a shell and the French Quarter is strewn with debris. These are national landmarks and it shocks us as a country to see them changed by chance. The thing that struck me the most about the scene was not the floating cars or the hundreds of emergency vehicles waiting at the ready, though. It was one quick shot of a family stranded on their porch signaling to the media helicopter with a flashlight. The father was flashing an SOS signal with one hand and holding a child in the other. The water was up to their knees and it was rising.
These are people just like you and me. They own businesses and attend PTO meetings. They saved up for sofas and new cars. They cherish their photo albums and family heirlooms. Only they have just lost everything. Their homes are ruined, their water contaminated, and their “normal” has forever been changed all by one turn of a storm. One of these people is my brother Michael. He lives in Gulfport, Mississippi. He and his girlfriend evacuated in time, thank God, but their home is a pile of toothpicks this morning. He is 21 years old and is just getting his life together after a rough start. Now he has to start again.
This could very well turn out to be the worst national disaster in our nation’s history. My husband told our family all about the happenings over dinner last night. As he talked about the rising water and the trapped people, I watched Brandon’s lips tighten and his brow furrow.
“But, Daddy…God said he’d never do that again and He keeps His promises!” He was angry. Others around the table jumped in quickly and tried to explain the particulars. God promised He wouldn’t flood the world again and this was just a small portion of the world. Brandon didn’t care. That was a technicality to him.
“But He promised! He promised He wouldn’t flood and He did and people are dying because of Him? Why?”
The anxiety at the table was palpable. Some tried to explain the logic another way, but it was futile to this soft-hearted six year old. Hal stepped in and said, “Look everyone, there is no easy answer – let him question –.” Later, after dinner we talked about how while God is all-powerful, sometimes bad things just happen. That’s life. It sometimes doesn’t make sense and easy answers only stop us from wrestling with that fact. They don’t really help, they just make us stop questioning.
I hope my kids never stop asking us those kinds of things. I hope I never do either. The closest I’ve felt to God has been on the heels of me questioning Him. The farthest away I’ve felt is when I listen to other people when they try to give me platitudes and easy answers. The sentiment I hate hearing the most is the dreaded, “God has a plan. He’s got some reason for your illness.” That makes smoke come out of my ears. Not because it makes me question God, but for exactly the opposite reason. It’s too easy. That kind of thinking (and it’s prevalent, trust me) is based on the assumption that God GAVE me cancer and is sitting back smugly watching to see how I’ll handle his “gift”. Will I pass the test? Or will I “stand in the way” of his ultimate plan?
I think that’s a load of horse manure. That is not the God that I know and trust. My God hurts for those that are hurting. He HATES that I have cancer. He hates that my children cry in my lap at times asking me when I’m going to get better. He hates the fact that at 32 years old, I sometimes don’t even have the strength to get up off the couch. I refuse to believe that He did any of this to me. Does that mean He’s not all-knowing? No. It just means that we live in a fallen world and really terrible things happen just because they do.
I read in my Livestrong notebook yesterday a quote that I love. It said, “When people tell me that cancer is the best thing that ever happened to them, I want to punch them in the face.” Cancer is terrible. It takes a perfectly good body and eats away at it. It takes everything you knew and held dear and turns it upside down. It fills your home with fear and uncertainty. Much like rising flood water does.
What I hold on to is that DESPITE the fact that bad things happen, my God has the power and desire to turn those bad things into good things. Good things will come out of my cancer. They already have. And I have to believe that He can make good things come out of this terrible disaster too. That’s what makes Him a powerful God. Who else could take a disease-ridden body and make it whole? Or take a debris ridden city and build something better with it? That’s more triumphant and worthy of praise than a God who destroys in the first place and then watches like a mean school teacher to see what happens next. I hope my children grow up knowing that God. And I hope they always keep questioning.
Peace, Love and Prayers to the victims,
Jenny
');document.write('Update: Sunday, August 28, 2005
"Generosity"
My husband is so generous. He has given me the common cold. Last week, he came down with a terrible cold and was knocked out for a couple of days. I hate to admit it, but deep down, I thought he was a wimp. He complained about his throat and made a fuss about how sick he felt.
I, Jenny Runkel, publicly apologize for said thoughts. I now know just how ill he really felt. I woke up two days ago with a searing ache in my throat. Now, the little bug has invaded my sinuses and I sound like Kathleen Turner on steroids. Yuk.
I don’t think this should affect my last treatment, but we’ll see. If you’re the praying type, shoot one up to the Big Guy for me.
So, other than feeling like I’ve been run over by an eighteen wheeler, things are good. I actually count myself as lucky since many people feel this way as a regular side effect of the biotherapy, Rituxan than I’m on. For me, it is as if nothing were being pumped into me.
Let’s see, what else is happening…
I had a great visit with my mom this past week. She came in from Houston to take care of me for my last treatment. She was an amazing help. She cooked all of my old childhood favorites to make me feel better. There is nothing like my mom’s fried shrimp, chicken spaghetti, and corn soup to perk up the spirits. Thanks, Mom for providing such support to me and my family. I am glad we can walk through this together.
Don and Brenda went on a weeklong road trip to North Carolina and came back here on Friday. They plan on staying here until I finish this LAST ROUND of chemo. Not many in-law relationships could withstand this much “togetherness”, but Brenda and Don are unique. They are extremely self-aware and honest. If we need space, we tell them and they go upstairs to their room for the night. There’s also their sense of humor. My friend was mentioning that although he really enjoyed their visit, he was glad that his family was leaving his house after seven days and Brenda laughed and said, “Seven days! How does he think you feel after three months of family?!?!?! Does he know that I sometimes talk so much that my lips hurt?”
What else?
The weather here in ATL is beautiful…finally. This summer was brutal (for several reasons) but we’ve been blessed recently with a bit of a cool front. I’ve been able to take some walks around the neighborhood and feel a cool breeze on my hair…oh yeah! I think my hair is starting to grow back! Granted, it is minute and microscopic, but I really think it might be growing. I never did lose the stubs around the sides and back once I shaved, but there was a huge patch on the top and front that was as slick as a cue ball. Well, there is now what looks like tiny carpet fibers growing on my “fairway”, as Hal calls it. There is also a few little guys coming in on the back of my neck. My husband refuses to agree with me – I think he’s afraid of me being disappointed, but I know they are there. I still can’t tell what it will really look like, though – I guess we’ll find out soon enough.
I guess that’s about it – time to find some chicken soup and try to get through this bug.
Peace, Love, and Generosity,
Jenny
');document.write('Update: Thursday, August 25, 2005
“A Little Tenderness”
People ask me all the time how my kids are handling everything and I never quite know how to answer them. Honestly, I don’t even know the answer to that question myself. To be quite honest, that has been one of the hardest parts of this whole thing. Watching my kids struggle with my illness.
How do I know they struggle? Brandon, for three months now, has been frightened to go anywhere alone. He won’t go up the stairs without someone with him. For a while this frustrated me, until I realized that it is just his little six year old way of getting comfort in a really difficult time. Granted, he is my baby and I probably gave in to him more than I should have even before this happened, but it breaks my heart to watch him cling to me. Last night, he couldn’t sleep. I couldn’t stay awake. So, at 9:00, I let him crawl into bed with me. He tossed and turned and then he finally turned to me with his precious little freckled specked face and said, “Momma, I’m really sorry, but I would feel so much braver and sleepier if you would just put your arms around me while I go to sleep.”
I want to remember that moment forever. It put everything into perspective and made me want to hug away all the stress and confusion that my family has gone through this summer. Parenting well through all of this has been extremely difficult. It takes a tremendous amount of energy not to lash out when I’m tired and they are acting, well…like kids act. It’s a tough line to toe. I don’t want to let anything go just because I’m sick; that would only make things worse. My kids crave boundaries and structure like nobody’s business. School has been a life-saver for us all. But there is also room for understanding and that’s where it gets tough.
Hannah is now 8 (and a half, she’d say) and is handling things in her own way. At first, she retreated into books, computer and tv…anything to be alone. We gave her some space and then put limits on her alone time to bring her out a bit. Boy, did she ever resist. For a while, she reverted back in maturity a couple of years with tantrums and crying. Since school started, she has turned a new leaf. I think the key with her is just spending any kind of time with her. She completely opens up; it is beautiful. Yesterday, Brandon was at Ben Hemby’s house (again…thank you Hembys from the bottom of my tired heart) and Hannah and I sat together on the couch. We talked and I helped her study for her first big test. We drew together and giggled. The tv was off and the stereo was on instead. She was glowing. She is much more able than Brandon to put words to her feelings; of course, that just comes with age. She’ll do the funniest things that let me know she’s thinking of my illness. The other day, at the dinner table, she just started singing, “Cancer, cancer, cancer…”. I looked at her and she just shrugged her shoulders and smiled.
I know that ultimately they will be ok and so will Hal and I. Kids are incredibly resilient when it comes to things like this. We just want to keep them talking. But it is hard when I think about what they are having to deal with. The uncertainty, the change in our household, the constant stream of family here to help (don’t get me wrong – we can’t do without it, but it is different for the kids), the questions they must have about me, themselves and their own health. I get angry when I think about how cancer has stolen some of their innocence. I hate that they must be worried about me. I cringe (and smile) when Brandon asks me how my cancer feels today. I know that if Hal and I handle things as I know we can, this could all be a tremendous growth experience. But growing really hurts sometimes.
Peace, Love, and One More (please God),
Jenny
');document.write('Update: Monday, August 22, 2005
“Big Mistake”
“Cancer picked the wrong guy. When it looked around for a body to hang out in, it made a big mistake when it chose mine. BIG mistake.” – Lance Armstrong, in the throes of five hour a day, five days a week chemo treatments.
Lance Armstrong has, obviously, become one of my heroes. His story always impressed me before I became a survivor, but it never inspired me as it does now. Whenever I get down or whenever I feel great, I think of this quote and smile. That very sentiment is exactly how I have felt about this situation from the very beginning.
Sure, there was the initial shock of the diagnosis, but as things began to sink in, I had that very thought. Big Mistake. Wrong Body. I even named my tumor “the melon” and talked to it, telling it that it better enjoy things now because it was about to get pounded. And while there certainly have been days that I don’t feel strong or cocky, something about that quote keeps me going. That and a million other things.
The smile of my husband
A good cup of coffee in the morning
The willingness of friends to do ANYTHING they can
My Mom’s fried shrimp and French fries
The butterflies outside my kitchen window
The touch and smell of my children
Very loud music
The extreme generosity of my in-laws
The desire to play tennis again
My students, both past and present
The fraternal feeling I get when I walk in the clinic
But most of all, it’s the feeling that no matter what and no matter when, “It’s OK”
My brother, Stephen, sent me a cd from a Christian group called Mute Math (don’t ask me what that means, I certainly don’t know) and he told me that the song “OK” made him think of me. The lyrics couldn’t fit what I feel any more perfectly. They are:
Down on my knees
Down on my face
You just say,
“It’s OK”
So many days I’ve thrown away
But You just say,
“It’s OK”
I don’t think I could ever repay
Your perfect grace
But it’s ok
“It’s OK”
“It’s OK”
“It’s OK”
You’ve become my embrace
Just tell me…
That “It’s OK”
Your precious words
Intoxicate
A heart that aches
With “It’s OK”
And You don’t recall my past mistakes,
You just say…
“It’s OK”
And this human mind can’t calculate
Your perfect grace
But’s it’s ok
“It’s OK”
“It’s OK”
“It’s OK”
You’ve become my embrace
Just tell me…
That “It’s OK”
Even though You’ve seen
The thousand times I’ve let You down
You’re always there if I should
Call Your name…
You’re unashamed
And “It’s OK”
On days when I feel like Lance and on days when I feel like those he beats, I hear the chorus to this song and know that no matter what, it’s all going to be OK.
Peace, Love, and brotherhood,
Jenny
');document.write('Update: Saturday, August 20, 2005
"Peace and Quiet"
Ahhh…. A quiet Saturday morning. There is just nothing like it for writing. Coffee on one side and my ipod on the other. A blank page just waiting to be filled with anything I choose. Lovely.
I’ve written before about why evening sessions don’t work for me. It’s just not a good combination to be tired and hurting while trying to write something decent. So, I’ve learned that I do my best work in the morning. Summer was wonderful. I could get up around 6:30 and have total peace and quiet for at least two hours. No more, thanks to school.
I tried writing once during the morning hours of a school day. Hmmm… Yeah… Let me try to describe that scenario to you. I got myself totally ready (a real chore these days – takes me two minutes flat) and woke up the children. I thought I could get in some time before breakfast You see, they are supposed to dress themselves, brush their teeth and hair, and make their beds before coming down for breakfast. Did you notice the suspicious word in that sentence? We’re working on it. So we all make it to the breakfast table together in one piece and I make breakfast. We all sit down at the table and my kids get a sudden case of the sillies. Do you know what the sillies are? The sillies occur when both children simultaneously revert three or four years in maturity and play with each other as such. Baby voices, tickle fights, feeding each other, whining when one crosses a line.
Yea. All of that is pretty hard to write through. That day, my entry looked something like, “I’m feeling frustrated and want to scream at the top of my lungs! I want to get off of this horrifying roller coaster and I don’t see an end in sight. Oh, yeah, I’m feeling fine cancer wise – great actually.”
So, weekend mornings are my new times to write. Maybe I can crank out a few and save them for the week – we’ll see.
So, what is going on with me cancer wise? I just finished the second to last round of chemo. Yes, ladies and gents, if you’ve been following along, that means just one more round of poking and prodding, one more round of giving the vampires my arms willingly, one more round of feeling so tired that I can’t walk up the stairs sometimes, and THANK YOU GOD – one more round of mind and mood altering steroids (well, actually two rounds of those – start one today).
I am feeling very upbeat about this as you can imagine, but I am also hesitant. After September 2, I have to undergo a battery of scans to see if there is ANYTHING left in ANY part of my body. If there is, and depending on what it is, I will undergo further treatment. That will likely be a month of radiation and then another round of scans. If that doesn’t do the trick, then we’re looking at some more serious options…More aggressive chemo or a stem-cell or bone-marrow transplant.
Radiation sounds inconvenient, but not nearly as painful as chemo. My hair should start to grow back and I won’t have to be on steroids or have to deal with mouth sores. I should also regain some of my motor skills that have been compromised with all of the drugs….just in time for fall ALTA (tennis for the uninitiated). The say that the only real side effects are a sunburn around the affected area and fatigue. I will be just like summer with two active kids! I can do that. The other thing I’m worried about his that you have to go in 5 days a week for a month, so I’m not sure how I will be able to keep working. Trust me, that will be a very high priority for me. School keeps me going on many days.
Speaking of school, I have a wonderful new batch of students this year. They are kind and thoughtful. Their innocent curiosity is starting to show as they get to know me more. And I am becoming connected to a few that I might never have before due to the difficult things that they are facing in their own families. I’ve always encouraged them to talk to me about these things, but it must be easier for them now that they see me as a real person who struggles too.
Anyway, the munchikins have made their presence known, and thus ends my blog for the day. I love you all for the many forms of support you’ve given to me. You all have gone above and beyond what I ever could have expected and I am reminded of the words of the great Samuel Johnson…
Our brightest blazes
Are commonly kindled
By unexpected sparks!
Peace, Love and Saturday mornings,
Jenny
');document.write('Update: Monday, August 15, 2005
"History"
I am one fortunate woman. My husband absolutely adores me and has ever since the 11th grade. Whenever he really looks at me, not with the mundane tasks of married life, but in the small moments that matter, his eyes shine and get crinkly at the corners. There have been times in my life that I have not felt beautiful, but he has always tried his best to convince me otherwise. Trust me, I realize that this is not the case for every woman. For that, I am sad. It is a pretty amazing feeling to know that the person you’d most like to be with in the world feels the same way about you. Why am I so sentimental tonight? I don’t really know. Maybe it’s the pain pills. They do tend to make me chatty and warm. But I think it’s more than that.
It all began back in 11th grade history class. Actually, it probably began before that. We had an English class in school each year from 6-11th grade. It was a match made with Shakespeare. Ha. It really wasn’t that sweet or romantic. It was awkward and painful most of the time, but that’s high school for you. It all started with a pair of jeans.
Hal was the kid in class who probably had more smarts than the teacher, but had an attitude the size of Texas to go with them. I was a pretty typical overachiever who wanted the teacher’s approval so badly, I’d do just about anything to get it. We were paired together in Honors World History for a project on the French Revolution.
From the moment that I got to know Hal, there was just something different about him that made me want to be around him. He made me laugh and he made me think. He still does. We made a video – I would pay big bucks to get my hands on it now – and guess who played the King and Queen…yeah… The rest of that year, we found chances to be together, but always as friends and during the last few days of school, I got a phone call that would change the course of my life. It went something like this…
“Hello?”
“Jenny? This is Hal…from class.”
“Oh! Hi Hal!” – I was shocked at the call. I had a crush on him, but from his behavior, I assumed that he thought I was dull. He thought that about most people.
“Yeah. I was wondering something.”
My heart skipped a beat. Could it be? Could he be about to ask me out on a date? Ok..ok… calm down. Play it cool.
“What’s that?” – did I sound too eager? What a dork. Slow down. Listen for how he asks you. Act like it’s no big deal. Is my face red? My ears burn.
“Do you still get a discount at Miller’s Outpost?”
“YES!” – Wait a minute. What did he just ask?
“Good. I was wondering if you could get me some jeans.”
I felt like such a loser. Here I was hoping for a date and he was wanting a pair of acid washed denims (remember, this was 1989). More than my ears were burning now.
“Um…sure. I could meet you at the mall and buy them for you.”
“Great. Thanks. Want to meet around 4?”
I was confused and a bit stunned. Not to mention humiliated. I brought my best friend, Janet Dodd, along with me for moral support and we walked in to the store, met Hal, bought the jeans, and parted ways. Don’t feel too sorry for me. As it turns out, he WAS trying to ask me out, he just was lacking in the smooth moves department. When I brought along my friend, he was crushed. It took us a few more awkward encounters to figure all of this out, but once we did, we started dating for good. And the rest is history. Well, seven breakups later, the rest is history. And history is where it all began. I guess that’s what I’m really writing about tonight. History.
Hal and I have a history together that has included some really rough times and some really amazing ones. This whole cancer journey just adds another dimension to it all. This past Sunday, Hal went up in front of church to express our thanks to the congregation, but he ended up expressing more to me than to them in those moments. He has always been my biggest supporter in all that I do and one of the things that I love about him is that he always tries to make me look good in stories. Trust me, that is not an easy task at times, but he manages to find the good in what I do and say. He is gracious when I fail and he is absolutely glowing when I succeed. He buys me cards for no reason and places them on my pillow. He doesn’t hold grudges and he admits to his own shortcomings better than anyone I know. And he’s been doing all of this consistently for the past 12 years.
Throughout my struggle with cancer, he has been by my side in so many ways. He makes me laugh and he lets me cry. He drives me around and faithfully sits through each and every appointment. He is carrying such a heavy burden and dealing with all of the medical and household bills so that I don’t have to. I guess the reason that I’m writing all of this is that I’m tired of getting all the credit. Behind the scenes is the man who changed my history and I couldn’t do any of this without him.
Thanks Hal. And you still look great in those jeans.
Peace, Love and Denim History,
Jenny
');document.write('Update: Saturday, August 13, 2005
“Good News”
Well, I feel like Christmas has come a little early for me this year. I had an appointment at the clinic yesterday and I learned about some very exciting news. As Dr. Jay was evaluating my bloodwork, she mentioned that my next treatment is my second to last one! We have all been planning for seven treatments, and the office staff had scheduled me for as many, but apparently, I only need SIX!!!!!
When she told me that, I almost lept off the table to give her a bear hug, but I was in too much shock from the news. So, now the target date for finishing chemo is September 2, which is just so much better sounding than September 16. I still can’t stop smiling. Everything looks a little brighter this morning and I couldn’t wait to get on the computer and share the good news with all of you.
She did mention that radiation is a distinct possibility if any cancer cells are lingering, and that’s a bridge I’m willing to cross if I need to. That will present its own challenges, of course. Apparently, radiation therapy takes four weeks and you have to go in every day for five days each week. The upside is that it only takes about 30 minutes each time and the side effects are nowhere near chemo. The real upside is that I might not even have to do it – we really won’t know any more until my next round of scans in early September.
Dr. Jay continues to be impressed with my progress. She calls it “remarkable”. I truly think that much of the success is due to the amazing amount of support I have at home, at school, at church, and across the country. I can really feel the presence of all of you each day and I want to take this chance to say thank you to ANYONE who has done ANYTHING for me through this. At first, I tried to keep up with my thank you notes and I was doing pretty well. Umm…yeah….not so much now. I’m hoping everyone understands how truly thankful I am for each meal, card, prayer, and gracious act of kindness. So, in a terrible lack of etiquette, I’d like for this post to serve as a gigantic thank you note.
Whew. I feel better.
I’ve been experiencing some strange emotions lately, and no, I’m not on steroids as we speak…I’m finding that it’s really difficult for me to allow others to do so much for me. At first, I had no choice because I felt so sick and I was so laid out by chemo. It was easier to accept then. Now, I have this strange feeling of guilt when people do things for me. It’s almost as if I should be handling things better or something. I know it’s ridiculous. I’m still undergoing chemo, for goodness sake. It’s just that it has become “almost normal” to me and I hate still depending on everyone. I fear that people are getting tired of me and my situation. Maybe it’s just that I am. In my heart, I know that people are actually blessed by helping, I just want to be one of the helping ones now. I’m tired of being so weak.
Weird, huh? Oh well.
The kids are still doing well, I think. It is all taking its toll on our family, but I’m so proud of how we’re all sticking together. One thing that is really healthy about us is that we talk about everything, and that is especially good for us all now. Brandon is being very sweet lately. He helps me get out of chairs and brings me things I need. We were playing army men today and he told me to go first, “Because you have cancer.” Cute. Hannah has struggled a bit more lately and I think it’s likely because she is able to comprehend things a bit more fully. She has some trouble sleeping and has regressed a bit in terms of maturity (then again, so have I). I think she just needs a little extra attention from us. I took her to a coffee shop this morning and we laughed and read our books together for a while. On the way home, we listened to some music as loud as we could stand it and opened up the sunroof. I haven’t seen her smile like that in a while.
So, it’s nice and quiet (for now) around the house and I think I’ll take this opportunity to take a nap. Something woke me up at 4:30 and I really never got back to sleep. I hope you all have a great day.
Peace, Love, and September 2,
Jenny
');document.write('Update: Friday, August 12, 2005
“Rise and Shine”
Hi everyone. I have decided that morning posts are a much better idea. If I wait and post in the evening, things often look more grim than they should. I am embracing the fact that I am a morning person. It’s a difficult thing to say because I’ve always hated morning people. They are often chipper and happy before the sun rises and that’s just wrong. Well, I don’t know if it’s the medicine, the cancer, or just me, but I have become one of the dreaded MP’s. So, I thought, why fight it? I’ll just get up a bit earlier than usual and tell folks what’s going on with me. I do have one disclaimer…since school has started, I have even less time for these writings and so the grammatical and lyrical quality of them will drastically diminish. Maybe I can make up for it on the weekends…
So, I’m feeling better each day. The farther away I get from Friday’s treatments, the healthier I am. I wake up each consecutive day and say to myself, “Oh, yeah…that’s what feeling better is like…” and then I have coffee, so things are good.
Hannah had her first gymnastics class of the year yesterday and that was so much fun to watch. She really is growing up to be a beautiful little thing. They evaluated her yesterday, so she basically had a private lesson with three instructors and went to various stations. It was so humbling to watch her do all of these things that I didn’t know she was capable of and then watching her grin as she did them. It just reminded me that she’s her own little person.
Brandon decided to take the year off from baseball, which in retrospect, is easier on us all. I must admit that I really wanted him to play – he’s just so cute in that uniform, not to mention the fact that he’s really, really good. I am proud of the fact that I just sat on my hands when he told me and didn’t push anything. I acted like it was no big deal to me and then he said, “Maybe I’ll play in the Spring.”…yes!
School is going very well thus far. I’ve made it to Friday, and that’s usually the goal of any teacher, so I feel proud of myself. My new students are so sweet and considerate. I spoke to them frankly on the first day I met them about what I was going through and they have responded amazingly. Someone once asked me if I thought they would try to take advantage of me because of my illness. My response was, “You don’t know our kids.” I have been so overwhelmed by the love and care of these students, not to mention the outpouring of love from my former students.
Not one day goes by that I don’t hear from a former student either through email, a visit, a card, or a sweet package. I want to say something here that I’ve learned through all of this. All the support adds up. It is cumulative. I used to wonder what I could possibly do to help someone who was hurting, and so I would feel paralyzed and not do anything. Now I know that ANYTHING you do makes that person feel better than the nothing you could have done. My students have taught me that one. They’ll send mix cd’s and cards, cookies, head coverings, books, poems, funny DVD’s, and even snow cone flavorings…all in an attempt to show their love. The best part about what they send is their honesty. Most of them apologize in their writing about not knowing what to say, but I love it. They are raw and sweet and they make me feel alive.
So, that’s why I’m going back this year. It’s what keeps me going. Well, it’s one of the things. Coffee is pretty darn good too.
Peace, Love, and Cacao,
Jenny
');document.write('Update: Wednesday, August 10, 2005
"Back to School"
Have you missed me? I haven’t had as much time on my hands lately to write because I went back to work on Tuesday. It has been wonderful to be back amongst the living and working, but it has taken its toll on my energy level. I come home pretty cranky and tired, which hasn’t been fun for my family. Although, come to think of it, that’s not too much different from how I usually start the school year.
Because of my planning periods, I have been able to take a nap during each day, which has helped me make it to 3:00. The students have been very sweet and cooperative and just being there has really helped keep my mind off of being sick for most of the day. The problem is that I really don’t have much steam for anything else once I get home. I talk all day at school, so chatting on the phone doesn’t appeal to me. I basically sit in the recliner and watch my family. I know this is all taking quite a toll on them because we are all on edge lately. Hannah is having some trouble sleeping and Brandon told me last night that he thought he had a tumor. He was feeling his ribs in his chest and seemed relieved when I showed him that they were the same on the other side. It was sweet, funny, and sad all at the same time.
The kids started school Monday and I think they’re doing well. They both have teachers who are doing whatever they can to make this easier for us and I so appreciate that. It is a challenge on a good day, when I’m not sick, to keep up with their schoolwork and mine, but it’s doubly hard now.
I was hoping that school would wear out the kdis a bit, but that doesn’t seem to be happening. I know that I am much more sensitive to things now and that’s hard on everyone. I snap pretty easily and they aren’t old enough to really understand that. My in-laws and husband have been incredible and I’m still getting dinners three times a week from my sweet friends. Without all of this help, I think I would just curl up in a ball most days.
I am officially more than halfway through treatment, which sounds so much better than “almost” halfway through it. I went to the clinic for fluids Saturday through Monday and I finish the Prednisone tonight, so I am on the upswing of treatment number 4. I go in for bloodwork and a red blood cell booster shot on Friday, and I’ll know more then about how things are looking. So far, Dr. Jay is really pleased with my progress. She says that she couldn’t imagine anyone doing better, which is nice to hear. Oh, yeah, she did adjust my medication and that has helped with the steroid woes. She just changed when I take them and added Ativan, which helps with anxiety, to my ever growing list.
So, that’s about it for now. Nothing profound today….just don’t have the energy for it. I will try and post about every other day to keep you all updated.
Peace, Love, and zzzzzzzzzzzzzz…
Jenny
');document.write('Update: Monday, August 8, 2005
Yesterday, Hal and I celebrated our 12th anniversary in high style. We packed a bag and headed into downtown Decatur for a round of fluids at the Cann Cancer Center. My regular weekend nurses, Connie, Allison and Linda were there to wish us well and we toasted the moment with a can of Ginger Ale and a bag of saline. One thing’s for sure. I won’t forget this anniversary; it was definitely unique. Next year, I’m putting a word in for the Bahamas, minus the saline.
I don’t think I’ve posted since Friday morning. This weekend has been a bit of a blur. CHOP 4 will go down in the annals as a tough one. I will take part of the blame for it – it’s the first time I went into treatment without too much rest. I worked up at school a few days (much too much according to Hal) and I think that I may have pushed myself a bit. I’m afraid that will be my toughest challenge yet. When I’m there and I feel so good, it’s almost as if nothing is wrong with me. I can forget, if only for a moment, about medication and side-effects and fully concentrate on things that I love: kids.
Forgive me if I’ve already written about this…I’m now calling my far-too-often occurring mental lapses “Chemo Brain”. At registration last Thursday, I was so blessed by my former students. I was in my room quietly working when there was a small knock on the door. Three of last year’s graduates entered and bear hugged me. Then another four came in. And a few others. Suddenly, my room was filled with about 15 students from all the different walks of GACS life. These kids were so full of life I could almost feel myself soaking it in. They liked my “do-rag”, but not much else was said about my illness. They asked about the kids and I asked about their summers. We laughed at old stories and they told me new ones. As a handful of them would have to leave, another group found its way in. This must have gone on for quite some time, because I hardly got any work done and I literally had to tell them to leave. I cannot explain how much they gave me that day, just by being themselves and treating me as they always have.
Let’s see, what else could I tell you? Oh, I got a new kitchen floor! As a surprise early birthday present (I think it’s really a “cancer-stinks” present) my in-laws (Brenda and Don) and Mom went in on a new tile floor for my old-school linoleum kitchen. I never thought that tile could be so exciting, but it is. It looks like totally new house and their generosity means even more than that to me. Everyone has been so amazing through all of this, from small gestures and phone calls to ridiculous efforts and gifts (Don), I have been blessed beyond measure. I think when I get well, I’m not only going to have to taper off of my medication, but also from all of the attention and favors! Thank you to all of you who have done for me in any way. It all adds up to make me feel cherished.
Signing off with peace, love, and chemo brain,
Jenny
');document.write('Update: Saturday, August 6, 2005
“Paradox”
CHOP 4 down the hatch! I am now officially MORE than halfway finished with my treatment and the rest is downhill. I like to think of it as Friday on the calendar. My counts are still looking good and I am able to stay on the intended schedule, which is my goal. Wednesday, I went to the clinic for Rituxan and heard two bits of good news from Dr. Jay.
First, she had the PET scan results and they showed “very little metabolic activity” and no other tumor hotspots. Basically, that means that the cancer has for sure not spread anywhere else and the place where we know about is dying. The second thing she told me sounds silly in comparison, but it made me just as happy. I had asked her to reevaluate the dosage of my steroids because they turn me into an evil shewolf who is tempted to go on binges of terror. She seemed sympathetic and acknowledged that Prednisone is one of the hardest of all medications to tolerate; in fact, it is probably sending me into early menopause (which helps explain all the hormonal stuff). Then she said my favorite sentence, “I’d hate to change anything right now at the END OF YOUR TREATMENT because it’s working well right now.” I think I made her say it again a few times just for kicks. We are tinkering with when I take the steroids and how much anxiety medicine will go with it, so maybe this round won’t be so bad. I apologize now for any rudeness you may experience from me from now until next Thursday.
This was a big week for me. I had a round of chemo and I went back to work. Neither of those two things are easy on the body and mind, but both are necessary to me living. Because of those torn feelings, I can’t help but to think about my favorite author’s most famous words, “It was the best of times, it was the worst of times.” Dickens’ words never have felt more true to me than these last few days.
The concept of paradox is often very difficult to teach. Kids just don’t get how one experience can be both good and bad, joyfilled and dreaded. And the kicker is, these things depend on one another to be a true paradox. To be honest, it’s a hard concept to wrap my mind around and I’m supposed to teach the stuff. Well, Hal teases me that I somethow use everything that happens outside the classroom to teach a literary term, and he’s right. I’m always looking for good examples of irony and metaphor; those are usually easy to come by. Paradox is another story, but now I’ve got one.
Going in for CHOP is both the best of times and the worst of times. It is the best of times because it is literally saving my life. It is killing the thing that if left unchecked, would kill me. And, every time I do it, I move one step closer to being finished with this course of treatment. I move one step closed to having hair and energy. One step closer to jogging again and playing tennis until utter exhaustion. However, at the same time, the other side of the paradox has to be true in order for these things to occur.
The worst of times. CHOP sucks all of the life from me for 2-3 days. I feel dizzy when I stand up and nauseous at random intervals. I have to let other people do everything for me. Even walking is difficult. I get winded and confused sometimes. My mental acuity is not what it normally is, and that’s one of the harder side effects. It’s ironic that I didn’t act like a blond when I was one, but now that I’m bald, I could hold my own with the worst of them. And then there’s the steroids. I’ve written enough about them for you to know how evil they are in my mind. But again, there’s the paradox. Are they evil? Are they good? Yes.
So that’s where I am. Caught somewhere in the middle of a paradox with Dickens to keep me company. He and Pearl S. Buck who is teaching me in The Good Earth about real suffering. What do I cling to? The prominse that God can use all things for the good of those who love him. And Sydney Carton’s words, “It is a far far better place I go than I have ever gone before.”
Peace, Love, and Paradox,
Jenny
');document.write('Update: Wednesday, August 3, 2005
"Superman"
Hi folks. I know it’s been a little while since I last wrote. It’s for good reason…I’ve been working!!! For the last two days, I’ve been up at school attending meetings and getting my room ready just like a normal person. It has been wonderful in so many ways. I’ll tell you all about it, but I’d like to give a health update first.
So far, so good. The tumor has shrunk by at least 66%. I won’t have any more scans until after my last treatment, which is September 16. Then, that next week, I’ll have another CT scan, PET scan (yea.), and bone marrow biopsy (they’re putting me under this time). It’s funny. The closer I get to being finished, the more I worry about those last scans. I’ve gotten used to this routine and I’m nervous about learning another.
As far as this routine goes, I’m about to start round 4 today. It is my day for Rituxin, which is considered biotherapy, and Friday is CHOP (traditional chemo). Today is no big deal. I go in, they plug me into an IV bag through my port, and I sit for two and a half hours in a nice recliner. I don’t experience any side effects from this one at all. The only thing I dislike is the inconvenience of it all. But, it always gives me material with which to write the next day, so I’m not complaining. The well is getting dry at this point.
Friday is another story. CHOP is supposed to be an acronym for the four different drugs they combine, but I think it’s really onomatopoeia for how it feels. (If you’ve forgotten what YOUR senior English teacher taught you, onomatopoeia are words that sound like the action they do. Buzz, hiccup, hiss…you get the idea.) – sorry. School really is about to start isn’t? Good. Maybe I’ll stop trying to teach through this.
So, yeah…CHOP is no fun. But it’s not until Friday, so I get two more full days of feeling good.
While I’m thinking about feeling good, I’d like to tell you about being at school the last two days. Overall, the entire experience was incredible. The first day was like a spiritual retreat and the entire faculty and staff was gathered together in the church auditorium. I was bombarded by well wishes, tears, and hugs. There was practically a line around me of people wanting to encourage me. Each year, that first day back is always my favorite. Fellow GACS employees will understand why, but for those of you who have never attended that day of fellowship, I’d like to try and put it into words for you.
I think it is what heaven must be like. Seriously. First, there’s the food. The spread of breakfast goodies takes up three huge tables and gathers everyone together in good spirits. There’s lots of hugging and back slapping. People are laughing and catching up on their lives. The newcomers are introduced and ushered into the family by mentors who lead them by the hand every step of the way. Then there’s the singing. There must be two hundred of us, filling the auditorium with four and five part harmony that rivals that of the best Nashville has to offer. More food. More singing. Then we usually have a speaker to encourage us and help us remember why we do what we do. We pray for each other and for our students and parents. We all walk away better than we were before. Heaven.
Then there are the meetings. I won’t go into what those remind me of, but let’s just say they are a necessary evil of any organization.
Our theme for this year is “connected at the cross” and as I looked around the room, I knew I was where I needed to be. There is no where on earth that I’d rather teach or watch my children grow up. I have been supported by these people in so many ways. I have more cards than I know what to do with and I will not have to cook for another month. But the best thing I have received out of the last two days is someone in whom I can look to for inspiration. It’s not easy being everyone’s “hero”. Where do I go when I need encouragement? I know now. I go to Kevin Nutt’s room.
Kevin is one of our science teachers and baseball coaches in the high school and he is my new hero. About a year and a half ago, Kevin started having trouble with his eyes. He gradually lost almost all of his eyesight. I’m not sure what the cause was, but he had to have several major surgeries that would render him incapable of teaching for most of last year. To recuperate from one surgery, he had to lay face down 24 hours a day for 21 days. He can now see vague shapes and shadows. He had one last surgery recently to hopefully regain some sight, but he won’t know the results for 8 weeks. When we asked him if he had to be face down again, he replied, “Yea, but just for seven days.” JUST SEVEN DAYS!!! Think about that. Lying down on your stomach all day, every day, without being about to see anything. Somehow he did it.
Kevin is returning to the classroom this year. The state is providing him with some brand new technology to assist him and our school is making some accommodations like student aides and parent volunteers. But Kevin is having to relearn how to do everything. All last year, I wanted to talk to him, but I never quite knew what to say. This year, I did. He and I talked yesterday for quite some time and it was like chatting with a long lost old friend. There is a connection that I am able to have with people who are hurting that was never there before.
If you think I have a positive attitude, you need to meet Kevin. He expressed what I often feel when people ask me how I stay so upbeat. His words? “What else am I going to do?”
What’s the point of being negative? Sure, you sometimes have those moments where you question and cry and know you’re in the deepest valley yet, but why stay there? Just be there, get it out, then start to climb out again. There’s just no other option according to Kevin. And me.
So this year, when I start to feel like I just might stay in the valley, I know where to go. Coach Nutt’s room, where I’ll be greeted with a smile, a hug, and more understanding than most can give. Come to think of it, that’s what heaven might be like too.
Peace, Love, and Heroes,
Jenny
');document.write('Update: Monday, August 1, 2005
"We\'ve Come a Long Way, Baby"
Well, here it is. My first day back at work. I am nervous and excited at the same time. I have been looking forward to this day for some time and I had a difficult time sleeping last night. To be honest, I am also concerned about today. I have no idea how my body is going to hold up and I am scared that I will catch something from a well meaning hug. Hal thinks I should wear a sign on my shirt that says, “I’m hugging you from here.” He’s nervous too.
At least I know what to expect, work-wise. Not like five years ago when we first arrived at school. You know the story of how we got our jobs, but the story of how we got TO our jobs is much more entertaining.
Five years ago this past Friday, Hal graduated with his master’s from ACU. He and his father then loaded the moving truck that day and we all left at 5 A.M. for a 9 A.M. flight to ATL in Dallas. This was pre-9/11, so we thought we had given ourselves plenty of time for the three hour trip to Dallas. I mean, there would be no traffic. What could go wrong?
Hal and his dad were in the truck ahead of us and Brenda (Hal’s mom), the kids and I were following. At the time, Hannah was three and Brandon one. About thirty minutes into the ride, where the only thing alongside the road is the occasional tumbleweed, Hannah tells me she “has to go.” As the van trucked on towards ATL, I pulled over for a pit stop in the ditch. Hannah got out and Brandon started crying. As she walks to me, she asked, ”Where’s the toilet?”. I tried to explain our situation, but reason did not prevail. Hannah did. She needed a toilet and she needed one at that moment. I ran to the car, grabbed a paper plate (don’t ask me why I had one in the car – mothers will understand) and tore a hole in the middle. Viola’. Instant toilet. It worked. She went. And we were all happily on our way after only a short detour.
I glanced at the clock and saw that although that took a few minutes, we were still fine. Brandon finally calmed down and we started on our way again. About another hour into the trip, an eighteen-wheeler in front of us threw off part of his tire and I had to run right over it. Swerving at that speed would have been disastrous. Now, this is the era before everyone had cell phones, so Brenda and I threw a cautious glance at each other because Hal and Ken were already on their way to Georgia and we had no way of getting a hold of them. True, we were strong, resourceful women, but the stereotype of women knowing nothing about cars was unfortunately true here. Sure enough, we started to hear a strange grinding noise coming from under the hood. I glanced back at the kids. They were asleep and I really didn’t have time to stop. We pressed on.
So did the noise. Then the sparks started.
I pulled over for the second time that morning and saw that the tire tread had knocked loose a plastic portion of the bumper and it was touching the ground. I tried to pull it off, but it wouldn’t budge. Brenda got out of the car and we both pulled like crazy. No go. Thankfully, a kind farmer was plowing his field right next to us and he drove his tractor over, laughing all the way, I might add. He hooked us up and gave us a yank. Off came the bumper. He saw us panicking as we looked at our watches and offered to dispose of the plastic shard. We accepted and went on our way.
Not ten minutes later Hannah threw up all over the back seat.
Needless to say, we were now running very late. We screeched into the Dallas airport, dragged our bags and our very smelly kids into the terminal, and got in line behind a perfect looking family of four. As they got their tickets and went on their way, we limped up to the counter and breathlessly told the agent that we were here.
“Sorry,” she said, glibly, “You’re too late. That family took your seats. We can put you on standby.” And there it was. The dagger into my heart. I felt like I had lived out that old army commercial that said, “We do more by 6 A.M than most people do all day.” I watched the perfect family board the plane with jealous eyes and I questioned the sanity of this move across the country we were making. My kids were eating McDonalds and making friends in the airport lobby where we were to spend the next hour waiting on our plane. At first I was angry, but then something happened which changed the way in I view my circumstances when I’m feeling sorry for myself.
You see, that plane that we were supposed to be on ended up having technical problems. They sat on the tarmac for three hours and then had to board another plane in another terminal. By the time our original flight touched down in ATL, we were already unpacking our suitcases in our hotel and getting the kids in a much needed bath.
So, on this day, when I’m not sure what’s going to happen, I think back on that day and smile. At least I know where I’ll end up…home.
Peace, Love, and Traveling,
Jenny
');document.write('Update: Saturday, July 30, 2005
"Upswing"
First of all, I realize yesterday’s post was a bit self-indulgent and long winded. It was fun to write, though, so I hope you enjoyed reading it. Now. Back to normal. Well, almost normal.
I am feeling pretty good lately. I do get tired easily, as you might expect. I have tried to get out and about in the last couple of days to prepare myself for returning to work and I think I’m holding up well. I went to the doctor by myself, ate lunch out with a friend, worked in my room, held and attended meetings, and even did a bit of shopping. I think that might tire anyone out in two days, so I’m pretty pleased with my body for holding up.
It is a bit strange being out among the living, though. I get some strange looks, which is difficult to deal with, but I try to let them roll off my back. I suppose it’s good practice for school next week. I know that all of my colleagues are aware of things, but many of the kids aren’t and they’ll be naturally curious. I am preparing myself for lots of staring that first week, and I’m OK with that. Maybe. I’ll let you know.
The kids are doing well. They have been spending time with friends which is SOOOO much better than just sitting around the house…for all of us. They come home exhausted and happy. Thanks to all of you who are keeping them busy for me; it really is a huge help. Brenda and Don (my in-laws) drove up from Houston to help us out for a while, for which I am grateful and the kids are in camp next week. Things are looking up.
I am now entering my “good” week, so my energy should be on the rise if history is any indication. My mouth and throat sores are also on the rise, and that is no fun. I have this concoction called “Magic Mouthwash” that I am supposed to be taking, but I have a very hard time tolerating the taste and feeling it generates. It tastes like rotten strawberries soaked in old milk. Enough to make anyone nauseated. The feeling it generates is just as bizarre. It has a numbing agent in it, so when you take it, it feels like you are Bill Cosby in his old dentist skit, slurring all of your words. But, it helps, so…down the hatch.
I have been listening to a new favorite cd compilation made by one of my dearest friends, Julie Alholm. She sent it to me right after I was diagnosed, but it got lost in the chaos of life until about a week ago. When I was alphabetizing my entire house one night, I stumbled upon it and I can’t stop playing it. She called it “Dance” and it is filled with an eclectic mix of blues, old style Latin dance songs, African tunes, and 60’s folk. Each and every song speaks to me and makes me smile no matter what I’m feeling at the time. I’m glad that I didn’t discover it until now. I wasn’t ready for it back then. In closing, I’d like to share with you my new anthem from this cd. It is an old Bonnie Raitt song, but you country fans might recognize it from a Randy Travis album. It sums up everything for me at this point in time.
Valley of Pain
Don\'t let me grow bitter I pray
Give me strength to carry on my way
I\'m leanin\' on you like a wooden cane
While I\'m walkin\' through
I\'m walkin\' through
The valley of pain
I\'m believin\' there\'s a reason for this trial
This too shall pass in a little while
Oh Lord have mercy if I complain
While I\'m walkin\' through,
I\'m walkin\' through
A valley of pain
While I\'m walkin\' through,
I\'m walkin\' through
A valley of pain
Won\'t you bathe me in a river of my tears
Whisper hope and truth and courage in my ears
When I\'m hurting I have a dangerous tongue
I\'ll lose it and use it like a gun
Lord stop me if you see my takin\' aim
Whike I\'m walkin\' through,
I\'m walkin\' through
A valley of pain
I\'m walkin\' through,
I\'m walkin\' through
A valley of pain
I\'m walkin\' through,
I\'m walkin\' through
A valley of pain
Bathe me in a river of my tears
Whisper hope and truth and courage in my ears
Remind me when I reach the other side
I\'ll be thankful for every tear I cried
Don\'t let me grow bitter I pray
Give me strength to carry on my way
Don\'t let the darkness drive me insane
While I\'m walkin\' through,
I\'m walkin\' through
A valley of pain
I\'m walkin\' through,
I\'m walkin\' through
A valley of pain
I\'m walkin\' through,
I\'m walkin\' through
This valley of pain
Peace,
Jenny
');document.write('Update: Friday, July 29, 2005
“Waiting and Writing”
Good morning, everyone! I had a full day yesterday and my bloodwork came back normal, so there’s not much to report. Dr. Jay says I’m doing better than she could ask for and that she’s very pleased. I will continue chemo every other week until September 16 and then the next week I’ll have a CT scan, PET scan and bone marrow biopsy (yea.) to determine where we go from there. There’s a very good chance that all scans will be clean by then, but there is also a nagging voice in my head that asks, “What if they’re not?” I’ve decided to tell that voice to shut up until the scans.
Well, I’m facing the blinking curser again, so beware…this might be a rambling post without much point. On these occasions, I just write. There is a rhythm that sometimes comes and it sometimes doesn’t. When it does, it is almost like being in a trance. I can’t type fast enough and the music I’m listening to seems to perfectly fit whatever I’m thinking about. It’s a pretty exhilarating experience. It’s much like being in a groove athletically. Man, I haven’t thought about tennis in a few days, but I can’t help it with this analogy. It’s like when everything you hit feels right. You aren’t thinking. You aren’t second guessing yourself or your shot selection. You are just there, enjoying how good you’re playing. It’s an intense feeling that I really miss. Don’t get me wrong. It doesn’t happen all the time. Just like writing. Sometimes it’s there, sometimes it’s not.
Writing to me is something that I’ve always enjoyed reading. I never really gave much thought to doing it myself, though. In school, I was pretty good at it and it came easily to me, but I won’t lie – it’s not something I did for enjoyment. What was the point? I didn’t ever really feel like I had anything to say. Looking back, I wish that I would have been able to channel some of the junk that I felt as a kid into writing. It would give me so much insight into who I was and who I am now. Hmmm…
So, why do I write now? You people! Whenever I don’t post, my phone rings off the hook because people think I’m really, really sick. That’s only partially true. The real reason I write is much more complicated than that. It is now my routine. It helps me cope. It alleviates me having to verbally tell everyone I see what’s going on with me. It is something I’m supposed to do. Or so said Dr. Segre. Nope, he’s not one of my oncologists. He was my last college professor and he’s been on my mind lately. I tell my students about him every year and I am feeling compelled to tell you now. He is another Alyene Treas in my life. Someone who with one action, turned my life in a different direction. Indulge me for a moment and let me tell you about a fascinating man who shaped me.
It was my Senior year at the University of Texas and I was a history major. I was enthralled by history courses and the stories that came out of them. I couldn’t get enough of them. I had experienced some amazing professors who taught me about the world. Many had published and some were world renowned in their fields. I had taken Russian History, Japanese History, World History History, European History, Texas History (yeah…I’d like to take that semester of my life back), Global Politics, American History…you name it, I took it – every course that I could. So, as you might expect, I am very knowledgeable about the world. Umm…yeah... Not so much. I honestly don’t remember much that I learned. I made great grades and I wrote fabulous papers about intricate theories, but to this day, I couldn’t really tell you much about WWI. It wasn’t about fact for me. It was all about the stories. And the big pictures behind them. I loved watching how it all fit together.
Anyway, there I was, going into my last semester, thinking that the only thing I was good at was taking history tests (not very lucrative once you get out of college) and I had to make a very difficult choice. Which senior seminar would I take? Most of my classes had been large, but as a UT senior, you finally got to participate in a small, intimate setting with a top professor and some graduate students. The topics were smaller in scope and I had a terrible time choosing. Some of my favorite professors were holding them, but one caught my eye because of the way it was phrased. The course was called, “What is Fascism?”. I called TEX (our beloved automated registration guy) and signed up the next day because after all of that history, I really didn’t know the answer to that question.
I walked into class the first day and was intimated like never before. It was held in a small conference room with one large table. I was early. I sat down next to an older gentleman who I thought might be the professor, then I remembered that they are always the LAST ones to enter the room. The room started to fill with students from all walks of life and then he entered. Actually, his eyebrows entered the room first. They dominated his expressive face that we all came to fear and then to love. He was in his early fifties and he introduced himself as Dr. Claudio Segre’, a journalist at heart. He told us about himself. He was born and raised in Italy by a loving mother and a world famous physicist father. Their family left Italy for the US as Mussolini came to power. His father later won a Nobel Prize for helping to create the atom bomb and ending WWII. He had worked as a journalist around the world and was fluent in several languages. He then asked us about ourselves.
The room was silent. Most of us were babies, history majors, and professor pleasers. Our feeble responses sounded like a broken record. “I’m ___________. I’m from ___________, USA and I’m going to graduate school after this.” What bland neophyte dorks. And then there was Bruno. The man I had sat next to went last. He was the same age as the professor, only his accent was different. It was German. He told us that he grew up in pre WWII Germany and his family, too, left for the US, like Dr. Segre’s. Only his family didn’t get out until much later, long after Hitler had come to power. His accent was thick and his hands were rough. He was taking the course just to learn. He had no pen or paper. He and Dr. Segre regarded each other across the table and we were all dumbfounded. For the remainder of class, they spoke and we sat. I learned more in that one day then all of my other classes combined. And then it was over. As we dismissed, Dr. Segre handed out the syllabus, and informed us that our grade would be solely based on our papers. We were to read a book a week and write a five page discourse concerning the author’s view of Fascism. The discussion the next week would center on that book.
Our first book was a 300 page expostulation about the origins of Fascism. I worked long and hard on that book and ground out a paper for class the next week. It was a very difficult book to digest and decipher, let alone discuss in only five pages. In other classes, I could have at least 10-15 pages to say what needed to be said. I agonized over every word and tentatively walked into our second class holding my precisely worded document. I had titled it something bland and boring at the last minute, just because I thought I should. As class began, Dr.Segre turned to me first and asked me to do one of the most difficult things I’ve ever done. He told me that I had five minutes to write on the board the title of my paper and a ONE paragraph explanation of my paper. I thought I was going to throw up. He told the whole class to do the same thing on a sheet of paper while I was walking up to the chalkboard, and he handed me his piece of chalk.
I somehow made it to the board without losing my lunch and sat there looking at the blank slate, literally. I scrawled my lame title and then looked down at my paper. Five pages of blood, sweat and tears that easily took me 15 hours to do – turned into a few sentences in front of this class – in five minutes. I took a deep breath and started writing. I don’t remember anything except the sound of the chalk and the fact that it squeaked awkwardly a few times as I started each new sentence. I sat down and for the next 30 minutes the good doctor tore apart my soul, starting with my title. He then invited others to do the same. They dissected my paragraph word by word and I had to hold back my tears. I was embarrassed and humiliated; then I got angry. They weren’t even looking at me. They were telling Dr. Segre what was wrong with MY words, MY theory, MY understanding of the book we had all read. When the last person had finished, I wanted to crawl in a hole and curl up into the fetal position, but I held my head high and looked at the prof. He smiled at me and said, “Your turn.”
I looked at my paragraph and then looked down at my paper. I didn’t even realize I had done it, but I had written down notes on everyone’s comments. I spent the remainder of the three hour seminar defending my paragraph, and in effect, my paper, my self, to these virtual strangers. Without really knowing it, we were discoursing on writing, political theory, history, reading, and self-expression – all at the same time. When I finished, it was time for class to dismiss. Dr. Segre asked us all to turn in our papers as we left class and his only words to me were, “Your title needs work”. I went home utterly exhausted.
The remainder of the semester was the same; each week, we read a book, wrote a paper on it, tore apart one student’s world, then turned in our papers at the end of it all. Each week, Dr. Segre would return our papers with minimal fanfare. I was consistently making good grades on them, but he was tough. Very few positive comments, maybe an occasional “good”, but that was it. He still hated my titles. As a former journalist, he put more emphasis on a headline than he seemed to place on the paper. He infuriated me; he made me work harder than I had ever done before; he made me really think for perhaps the first time. Each paper I wrote took longer and longer. The title would often take me days to conceive and it never seemed quite right. I loved and hated that class.
A week before the end of the semester, we had our last session. More of the same, except this time, when I got my paper, there was a scrawled message at the end of it. It simply read, “Please see me during office hours.” Yikes. For two days, I overanalyzed what it could mean before I brought myself to his door. Then, I went, sure that nothing good was to come from this meeting.
I must have stood at his door for ten minutes pretending to read flyers and announcements on the bulletin board each time someone walked by before I had the courage to knock. When I did, his deep voice resonated through the hall with an ominous, “Come in…” I peeked in and there he was, tucked away amongst books with his eyebrows arched and his hair mussed. He motioned to a chair and picked up a file folder on his desk. I swallowed hard and sat down, ready for anything but the following conversation.
“Ms. Faulk, what is it that you want to do with your life?”
“Um… I think I want to go to teach history, like you.”
He laughed, nodded and leaned back in his chair. He reached for his file folder and opened it. Inside were copies of all the papers I had written that semester. He told me that I had potential as a writer and that I should consider changing my life’s direction. He handed me a book called Writing Down the Bones by Natalie Goldburg and told me that being like him would be a waste of my time. The world didn’t need another him, he said, the world needed people who could write and who would teach others to do so.
I don’t think I said a word more the entire meeting. He spoke passionately about writing and talked about the book that he, himself was working on. He lit up like a candle when he spoke of it and I could literally see the joy in his eyes as he talked to me. That day, I went to the counselor and added English to my major – my life has never been the same...and I’m glad. I never have taught history, although the theories and stories make their way into my classes. I completely stumbled into my current occupation and I thank God for it daily. I am good at what I do and not a day goes by that I’m not glad for that seminar and the subsequent conversation.
In the years since, I have wanted to thank Dr. Segre for taking the time and interest to speak to me. I got online about six months ago to try and find him. Late one night, while sitting at the computer, I went to the University of Texas website in the hopes that he still might be there. My eyes burned as I read the sentence, “Dr. Claudio Segre died unexpectedly in May 1995.” – only one year after our conversation. There was a link on the site to his last book, the very one he spoke to me about. I smiled when I saw the title he probably was never satisfied with. It read: Atoms, Bombs, and Eskimo Kisses: A Memoir of Father and Son.
So, what does all of this have to do with cancer? Not much, but it does have an awful lot to do with me. And that will last longer than this. I just know it. And until then I will keep writing and remembering the people that have done so much for me.
Peace, Love, and Eskimo Kisses,
Jenny
');document.write('Update: Thursday, July 28, 2005
Well, folks, the clouds are clearing. I am the last day of Prednisone and it is a tapered dose, so things are looking up. I have an entire week before that part of it all starts again and I think I just might make it. I feel really good again and I know my family and all of those close to me will be grateful.
Three things happened yesterday to make me remember how fortunate I am to be who I am. Lucky you, you get to hear about them… Ready?
First, I went up to school and worked in my room. Sounds like a mundane and ordinary task, but it felt so good to be there again. I saw many good friends and I actually got a bit of work done even though the kids were with me. Preplanning starts Monday and I cannot wait. The normalcy of routine is missing from our lives right now and I think we’re all craving it.
Before falling asleep last night, Hannah told me with heavy eyelids…”OK, Mom, here’s what I think we should do the rest of this week until school starts…” and she proceeded to list at least one “outing” for each day until Monday. That’s my girl, alright. She is as bored as I am sitting around watching the heavy, hot weather we’ve been having. It really is miserable here; throw in a prayer for rain or a change in the humidity when you’re chatting with God, Ok?
So, school was good for me. It gave us all something to do and there were several moments that I forgot about all that was going on with me and thought about “normal” things like the Senior Trip we’ll take in January. When I was making my semester outline, I realized halfway through doing it that I really don’t have that much longer to go. God-willing, when my students and I take our annual pilgrimage around campus dressed like characters from Chaucer’s Canterbury Tales, it will be fall and I will be finished with chemo. I just might even have hair. Fall has always been glorious here in ATL, but I think this year it will be better than ever.
OK… Second, I got to spend time with my tennis buddies and my amazing friend Mary Sada sans children!! It has been about three full days of me and the kids and we both really needed a break from each other, so Hal came home early and Mary came over to pick me up for our end of the season tennis party. She had come from work and I was on my way to a nice dinner afterwards, so we were both dressed up a bit. It felt so good to be riding in her Pilot with my sunglasses on and feeling a bit free again.
Mary is the best friend you could ask for. She is funny, beautiful, and caring. She is the type of person you can always count on for good laughs and good “crys”. And she has a closet to die for. She loaded me up with tops for school and scarves to match. She let me vent and made me laugh. She made me feel like the old me and I liked it. I then went down to the courts to see the team, but I stayed for just a few minutes because it was SO HOT. What a great group of women. They have been so supportive and loving – hi girls! Just when I thought I might need to ask Mary to take me back to her house, Hal pulled up to wisk me away from the muggy night with his air conditioned chariot…which brings me to the third thing that made me happy yesterday.
Dave Markert had a birthday yesterday. No one is really sure how old he turned, but it is somewhere safely in the vicinity of “older than me”. He had a blow out party at Ruth’s Chris Steak House with the ScreamFree team (minus the Chastains – we missed you guys terribly and love you much). It was an adults only dinner and it was more fun than I could have imagined. There was laughter and food to spare and on many occasions, I found myself looking around the table in awe of the amazing people that God has brought together in our company.
The food was really incredible. Many of us had never been before and it was a true treat. Besides, my side effects from chemo were nil, so I thoroughly enjoyed every single bite. But it was the company that truly made the evening for me. Each couple is unique and I love each of them dearly. I can’t imagine my life without them and I wouldn’t want to. How is it that just two years ago, we really didn’t all know each other? We toasted and roasted Dave and then, late into the night, we parted ways. I felt exhausted from an eventful day, but I was happy. As the hugs went around, I reflected on what made that day so great. And I realized that there was one common denominator. People. Friends.
It really doesn’t get any better than that. Well, the chocolate mousse cheesecake was pretty good.
Peace, Love, and People,
Jenny
');document.write('Update: Wednesday, July 27, 2005
"Judo and Parrots"
I think my husband might just call the men with the straight jackets when he reads this post. I think maybe he should. Last night, I had another, let’s just say “emotional” evening because of the meds. It’s so strange. I can totally feel it coming on like Eeyore’s dark cloud right around dinner time. I look at the calendar and mope about how long I have left to go. I glance at the clock and wish for it to be later. I growl at the ones I love the most. I am glad that tonight I have plans. I do better when I am out and about in the evening.
Mornings are a completely different story. I wake up refreshed and ready to kick cancer’s butt. I am almost always in a really positive and upbeat mood and I feel silly for the antics I subjected my family to only a few hours ago. Not an easy thing to deal with for someone who is usually a very even keeled person, emotionally speaking. Ug.
But, it is morning now. Life feels different. I just spent some time on Lance Armstrong’s website reading survivor stories and I feel strengthened. I read one story of an athlete who is an 18 year cancer survivor. He said something that made me smile and put an expression of determination on my face. He said, “pain is inevitable, suffering is optional.” He talked about how he used his will to get through the tough times. Just like working out. That helped me, because I find myself in a bit of a valley right now. I think it’s because all of the novelty has really worn out. I’ve worn all the scarves at least once and they all look the same. Forgive me for being repetitive, but it really is like being 7 or 8 months pregnant. Everyone tells you how great you look, but you feel like it’s a lie. You’re so sick of all of your clothes that you vow to burn them when you can fit into your old stuff. You realize just how much longer you have to go, but everyone else keeps mentioning how far you’ve already gone. And then there’s the hormones. And the hunger. I am hungry 24/7. It just doesn’t cease.
OK. I’m done. If I’m not careful, I’ll lose all of you in my rant and you’ll get bored hearing about all of this. Hmmm…. What else is going on? I went to the mall with the kids yesterday. That’s exciting, isn’t it? It was the first outing I’ve taken with them alone since all of this happened, and overall, it went pretty well.
I laid some ground rules down in the car:
1. I was paying for lunch and that was it. We brought their leftover Christmas and Bday money for them to spend as they chose. Hannah had amassed quite a stash – well over $100. Brandon had $7.23 left.
2. We were going to leave if I felt sick and there were to be no arguments about when that happened. I knew this was a distinct possibility and I also knew they’d be disappointed, so we played some “what if” games to help…
a. “What if you’re in line to buy your toy?” “WE LEAVE!!”
b. “What if you’re on the indoor playground?” “WE LEAVE!!”
c. “What if we’re in the middle of lunch?” “WE LEAVE!!”
So, we got there around 11:00 and headed straight to the food court. We ate and then headed to Ltd. Too to spend Hannah’s money. Brandon actually said, “Let’s go there first, so I can be last. Ladies First, right Momma!”. He’s currently in the please-me phase. He’ll ask me what I want him to do today – wow. I was so proud of both of them. Hannah because she walked straight to the clearance racks and bought two mix and match outfits with no help from me, and Brandon because he spent almost an hour in the girliest of stores without complaining one time. He entertained himself beautifully while Hannah would call me over to see a dress, exclaiming, “Mom! I know I’m not going to buy this because it’s full price, but look how cute it is!” – Ah….that’s my girl.
So, with half of her money and two bags full of stuff, we exited the store and headed to the toy store for Brandon. He took all of ten minutes and found over $30 of toys he wanted. We discussed his allotted amount and he chose a clearance sale board game to buy. We purchased the game and headed to the playground. Things were going well. Then I felt it. Then Hannah spotted the parrot. Or maybe it was the other way around. I can’t recall. Maybe the parrot made me feel sick. She still had plenty of her own money left and as we were leaving the store, she saw, “Polly Parrot! Records your voice and repeats what you say! ONLY $14.99!!!” She had to have it.
Simultaneously, I felt ill. It came on suddenly and hard. I was hot and nauseous, clammy and dizzy all at once. I told them I needed to sit down and then we had to leave as soon as I felt ok to drive. Brandon was ready – Hannah, not so much. She had her eye on that parrot just as much as I had my eye on the door. She let me know that she was NOT ready to leave by stomping her foot and crossing her arms. She pouted, “It’s not like you’re going to throw up or anything!” Little did she know how close I really was. I chose to flex my ScreamFree muscles and decided to practice Judo parenting. I told her that I was mad that I felt sick too (which was true). I let her be angry with my sickness. I told her about how I hated it too and how limited I felt by it, just like her. I started walking to the car and she started following. She still wasn’t happy, but I couldn’t blame her. Why should she be? In her mind, $14.99 for a talking pet was a real bargain. It would be like me walking away from a great outfit from NY&C on sale just because someone said I had to, even though I had the money!!
The ride home was quiet. Brandon fell asleep, I concentrated on getting home without a pit stop, and Hannah sighed…loudly. When we got home, I set them up with a movie and headed over to the recliner to rest. It was then that Hannah walked over to me and hugged me. She said, “I know it’s not your fault, Mom…well, it kinda is, but I get it.” We then watched a movie together and not another word was spoken about said parrot. Whew. I think hearing “Polly want a cracker?” over and over again just might have sent me over the edge.
Peace, Love, and Judo,
Jenny
');document.write('Update: Tuesday, July 26, 2005
"Lieutenant Dan"
“So, what kind of cancer do you have?” The question threw me at first. Most people don’t really talk to each other in the oncology waiting room. I turned to face my questioner and I was stunned by her beauty. She had skin the color of caramel and an adorable pixie hair cut. Her figure was slender and her clothes stylish. She couldn’t be more than 30 years old. Her eyes were bright and she looked at me expectantly.
“Lymphoma”, I answered with my eye twitching (because of the steroids, not any anxiety – if you haven’t figured this out…I don’t mind talking about my cancer). She smiled and nodded.
“I had Hodgkin’s Disease.” The word “had” reverberated in my ears. She told me her story. She was 26 years old, woke up one morning and found a tiny lump in her neck. Three doctors and three rounds of antibiotics later, she was diagnosed with cancer. She had to fight for the diagnosis and tests because of her age. She went through six months of chemo on alternate weeks and then three months of radiation. She was in the office for her first check up since being in remission. She was glowing. I told her my story. We laughed and mused about how cancer doesn’t care how old you are or how well you take care of your body. It pretty much does what it wants with you. Then the nurse called my name. We parted ways, but she stuck with me. I was, of course, encouraged by our short connection, but in a strange way, I was upset. I wanted to be where she was. She was the first survivor I have met who is in the same stage of life that I am and I was jealous of her. She was thin. She was beautiful. She was finished with chemo.
Last night I had a meltdown. I finally had the “why me” session with God. It started around dinner time when Hal reminded me that it was Monday. We both have sacred nights out with our friends and we try to let nothing get in the way of those. Well, cancer got in the way of mine and it was about to get in the way of his. I started pacing, my usual nighttime routine, but this time, I was angry. Not with Hal. I wanted him to go. No, I wanted to want him to go. But I didn’t. I was angry with cancer. But I didn’t know that for about an hour and a half. I spent that time fuming at other things and finally went upstairs and made myself sit still and feel something besides the medicine. My eyes started burning and I cried, but I didn’t know why. I started thinking of my Tami, the young woman I had met that day and it all came crashing down around me. I took a long bath and yelled at God. Then I sat and cried some more. I was tired of all of this. Tired of mouth sores and being bloated with medicine and saline. Tired of having no hair and having my kids ask me to put on a bandana because I look scary. Tired of hurting and feeling out of sorts. Tired of it all. I wanted it to be over. I wanted my life back. I wanted God to just take it all away. To be honest, that was the first time we had that conversation. Many of you have told me that you’ve had that one, and I’m glad for you. You are more honest with Him than me. I have wanted to have it for a while, it just felt forced until last night.
But last night, I couldn’t stop it. When I finished my bath and my cry, I felt tired. It was glorious. I have felt fatigued for a few months now, but not tired. It’s truly different. I walked down the stairs to tell Hal that I was OK and he could catch up with the guys, but as I looked at him, he just shook his head “no”. He was sitting on the floor with Hannah lying next to him and Brandon sitting on his back. They were watching Harry Potter and I sat in the recliner to join them. I didn’t fidget or fuss. I didn’t think of something else to do. I just enjoyed the moment. I watched the movie and I watched my family. I felt good. I fell asleep. Without my sleep medicine. At 9:00 P.M.
I found myself in my bed and had the best night of sleep yet. I woke up this morning at a decent 6:30 and felt pretty good. I still had strange dreams and I won’t pretend that I am not still tired of this “journey” that I’m on, but I do feel better. I feel a bit less restless. I feel a bit more at peace. I feel like Lieutenant Dan in Forrest Gump, having had it out with God. I know it was a good thing.
So, today looks a little different. I can’t really explain how. I am almost halfway through with chemo and school starts for me next week. I think I really need it. The sitting and waiting for things to happen is getting to me. I thrive on being around GAC. It feels like home to me. I am a bit nervous about those first few days and how I’ll hold up with the inevitable curious stares from students and how my body will handle the rigors of teaching, but I welcome it all. I know now that if I start feeling caged, I can yell at God some more…He can take it. I think He wants to take it.
Peace, Love, and Storms,
Jenny
');document.write('Update: Monday, July 25, 2005
"Sleepless on Steriods"
Hello to all. I couldn’t sleep in this morning, so I’m up typing away at 6:20. I’ve actually been up since 5:25, but I managed to find other things to occupy my time until now. I was afraid that writing that early would result in a disastrous post. Now, I’m fully awake and my head is clear.
Come to think of it. I can’t sleep in any morning. Either my teacher time clock is setting in and 5:30 is becoming the norm, or my medicine is having the same effect. Probably a combination of the two. Yep, folks, I’m back on roids. Love em? Hate em? Depends on when you ask me. If it’s 3:30 and I’m knee deep in cleaning out the game room – I’ll sound like Tony the Tiger and say, they’re grrrrrreat! The kids were still at Dave’s lakehouse all day yesterday, so I snuck in to their toys and decluttered. Ahhhh…. It’s so much better up there now. But, I realized I have a sickness. No, not cancer. This one is far more insidious. I am addicted to my label maker. I placed every toy we own in plastic bins and labeled them ALL. You name it, I made a label for it. Legos? Check. Army men? Check. Small doll furniture and accessories? Check. See, I told you…it’s sick. And I had a blast doing it; that’s the worst part. So, steroids then? Good.
Ask me around 10:30 p.m. Not so good. I am wandering aimlessly around the house trying to find something to do that won’t drive my family crazy. I try to take my sleeping pill about an hour before I want to sleep, but they kick in suddenly, so for about 55 minutes, I literally am scratching my skin, walking circles around my house, calling people on the phone because it gets me away from Hal. Don’t get me wrong, he’s amazing. I couldn’t be doing this well if it weren’t for him. He takes me to all of my appointments, has memorized my medicines for me, wakes up at all hours to bring me crackers in bed if I feel sick, but who in their right mind wouldn’t be annoyed with a bald woman running around at 11:00 p.m. wanting to declutter, alphabetize, and label your DVD collection? I can’t blame him when he sighs and looks at me with his, “you’re doing it again” face. So, when I see that, I know it’s time to disappear.
I went to the clinic yesterday for fluids and I am going again today. I might hit them up for magazines. (for those of you not associated with GACS, we sell magazines as our yearly fundraiser – anybody want some?) To tell you the truth, the office is in desperate need of some new reading material. I don’t know about you, but I think food magazines of any type should be banned from an oncology waiting room. You know people in there are nauseous, so why have a picture of a “braised pork tenderloin” sitting right there on the cover of Cooking Light to make them run to the bathroom? People are strange.
I am balding more every day. I’m actually glad. Before, I had a semi-buzz with only a partial bald spot. It started at the crown of my head and as Hal says, it took a dog-leg to the left (or right, I don’t play golf) to the front. It really did look like a fairway. Now, things are evening out, so I can go bald again. I met a stunning woman at the clinic today who was about my age and was as bald as can be. She didn’t even have eyebrows or lashes. I think it was her demeanor that made her stand out. I asked her about her hair and she said that she shaves it when it starts to grow back between treatments because she hates wearing hats. I liked her immediately.
Health wise, Dr.Jay says I’m doing great. My blood counts are all good and my body is withstanding the accelerated treatment very well. I’m actually glad she told me not to play tennis anymore; it sort of got it out of my system for awhile. I was pretty obsessed with it (ok, so maybe I tend to get a little carried away with things – I prefer to call it passionate). So, I walk on my treadmill and watch Ellen or The Daily Show. I try to do Yoga, but I’ve learned that Yoga and steroids don’t go very well together. Pilates is a bit better, but you still need balance, and I struggle with that because of my anemia (I get dizzy very easily).
Emotionally, I’m hanging in there. I had a dream that I woke up and looked in the mirror and saw a VERY old lady looking back at me. I mean, I had turned into an 80 year old woman. It was a strange experience, because in my dream, it really looked like me, only very aged. My skin was sagging, my teeth were yellow and crooked, I had no hair (oops, that part’s true). It was terrible. When I woke up, I ran to the mirror and was actually pleased to see my own reflection. I also woke up really hurting, which might explain the dream. Maybe I dreamt that I was 80 because sometimes, I feel that way. My joints and bones hurt and I have to walk really slow. That’s frustrating for me.
Anyway, I’m rambling. The kids are finally home and I am looking forward to a nice morning with them if they ever wake up. Go figure, right about the time I start waking up at the crack of dawn, they learn to sleep in!
Peace, love, and zzzzzzzzzzzz,
Jenny
');document.write('Update: Sunday, July 24, 2005
“Friendship makes prosperity more shining and lessens adversity by dividing and sharing it.”
Cicero, On Friendship, 44 B.C.
Roman author, orator, & politician (106 BC - 43 BC)
Last night I got to experience this quote firsthand. Some of our best friends in the world, Dave and Dorothy Markert picked up our children and took them to the lake for a night of catching fireflies and a morning of canoeing. Some of our other best friends in the world, Jon and Tasha Kaplan treated us to an amazing night of poetry and musicianship.
I experienced Bruce Springsteen for the first time last night. When I say experienced, I am not being melodramatic. It really was a once in a lifetime event. The venue was Phillips, where the Hawks try to play basketball, but they cut the arena in half and only about 7,ooo people got to see Bruce in all his glory. It was Bruce and only Bruce. No band, no horns section. Just Bruce. He played the banjo, the harmonica, the acoustic guitar, the electric guitar, the electric piano, the pump organ, and a baby grand piano. All the while, he opened my eyes with his poetry while he closed his eyes with his passion. Our seats were perfect, the first row in the second balcony section, complete with a place to rest my feet. I really couldn’t have asked for a better night.
Along this “journey”, I’ve come to appreciate simplicity more than ever. The feeling of contentment that comes with being amongst good friends is one of those simple pleasures that I often overlooked before all of this. Music is another. I used to listen to music in the car, just to pass the time. I never really listened to the harmonies, the backbeats, the way that the different instruments meld together, the lyrics. Go figure, I teach poetry and I have been ignoring 20th and 21st century greatness!
Another thing that has changed in me is my ability to know what I’m feeling. I know that sounds crazy, but you see, for most of my life I’ve been a pretty closed off person. I just hid it well if you didn’t think so. I walked through the majority of life pretty numb. There were a few things that stirred me. Teaching was one. My children, another. But most other things left me fairly cold. I remember growing up and crying about once a year and never really knowing why, which frustrated me to no end. I hated crying and saw it as a sign of weakness. I hated the way I looked when I did it and if someone asked me what was wrong, I couldn’t even tell them. Well, maybe it’s the drugs, maybe it’s the cancer, maybe it’s just me now, but I KNOW what I’m feeling almost every second of every day. And what’s more than that – I am feeling. I am not numb anymore. There is always something making me happy, or sad, or frustrated, or elated, or miserable. And I cry much more now. I cry when I’m sad. I cry when I’m touched. I cry when I hurt. I cry when I hear or see beauty. Like last night. I cried at a concert. I mean all out, tears streaming, shoulders shaking, crying. And when Hal asked me what was wrong. I knew exactly what to say. Let me show you what made me feel last night…
Bruce began playing this beautiful melody on the piano (sorry if I got that wrong, Jon) and started talking into the microphone. He began talking about what happens to you when you have children and the overwhelming sense of protection you yearn to give them from the moment you see their wrinkled little toes. He spoke about how it’s then that you know you’re in trouble because they are little people who will one day make their own mistakes, and that’s how it should be, but it sure is hard to watch as you go along for the ride. He then sang this song and I lost it:
JESUS WAS AN ONLY SON
Jesus was an only son
As he walked up Calvary Hill
His mother Mary walking beside him
In the path where his blood spilled
Jesus was an only son
In the hills of Nazareth
As he lay reading the Psalms of David
At his mother’s feet
A mother prays, “Sleep tight, my child, sleep well
For I’ll be at your side
That no shadow, no darkness, no tolling bell,
Shall pierce your dreams this night.”
Bruce then spoke again into the mike and talked about how Jesus had a choice. He could have run a little inn and had a little family of his own. He could have watched a wife, filled with child, then watched that child grow up. He could have chosen to see the sunlight hit their faces and see the air fill their lungs. He could have lived to see that one day, and the next day, and the next day, and the next day, and the next day….
In the Garden at Gethsemane
He prayed for the life he’d never live,
He beseeched his Heavenly Father to remove
The cup of death from his lips
Now there’s a loss that can never be replaced,
A destination that can never be reached,
A light you’ll never find in another’s face,
A sea whose distance cannot be breached
Well, Jesus kissed his mother’s hands
Whispered, “Mother, still your tears,
For remember the soul of the universe
Willed a world and it appeared.”
I had tears streaming down my face because that song moved me. I had never really thought of Jesus and Mary in that light. The pain she must have felt watching him become the man that he chose to be…I cannot even imagine. The pain he must have felt, knowing that he could have, at any time, taken a different path. The one of least reisitance…but he didn’t. He didn’t. That’s what made me feel. It stirs me, even today as I type the words. Watching my kids make choices that I wouldn’t make is one of the hardest things I do, but I have one heck of an example in Mary to help me along the way. She was quite the ScreamFree mother. Thank God for us all. And thank God for good friends, good music, and feelings - all sorts of them.
Peace,
Jenny
');document.write('Update: Saturday, July 23, 2005
"A Close Call"
Good morning to all. I completed round three of cancer-killing yesterday, but it was a close call. They will not give you CHOP if your blood pressure or blood levels are too low, and I came in feeling worse than I ever have. It was the strangest thing I’ve experienced up to this point.
Hal dropped the kids off at camp and I stayed in my classroom for about 45 minutes while he filled prescriptions and ran business errands. I cannot tell you how good it felt to be back in my room. I have the best room on campus with a back wall full of windows, showcasing beautiful pear trees, and two side walls filled with glass cabinets to show off my books and the amazing things that students do. So I wrote a letter to the Seniors, welcoming them back, but it was more about me feeling the assurance that I can come back too. That place is a second home to me. For all of its faults, no school or organization is without them, GACS is the only place I ever want to teach. Have you ever really read the responses to this website? Over half of the entries are from student and parents. My refrigerator literally will not close because of their generosity (coupled with my North Atlanta family – don’t’ worry, I’ll write about you all too, soon). I have two groups of students who are supposed to descend upon my house and pull weeds and place pine straw. Another is currently cleaning my room from top to bottom with Lysol and Clorox so that it is germ free the next time I’m there.
The thing about teaching school here is that there is always life and change surrounding you. Kids are always excited about one thing or another. They are willing to share their lives with you and want you to do the same for them. They want to be known. They want to be challenged. They want to know what really lies within them and I have the best job in the world because I get to help them find it.
I’m digressing. So, I was at school having all of these thought and talking to kids who were there working for other teachers when I started feeling light headed. I looked at my watch and knew exactly why – I hadn’t eaten anything since my breakfast at 6:45 and it was now pushing 10. Hal came to get me and on the way to the clinic, I had a major low blood pressure/low blood sugar attack. Not fun, let me tell you. The car was spinning and we were on the freeway rushing to get me there. I knew that if they saw me like this, CHOP would be off, so we pulled over to a Walgreens and got a Ginger Ale and a HUGE snickers bar. I felt like Mike Myers, the “hyper-hypo” kid from the SNL skits as I downed my snack, but I started to feel better for a few minutes. Hal then got me over to the clinic and they wisked me back into the chemo room. I sat down in the chair and I must have looked white as a sheet. Ana and Sharon (my two favorite nurses) rushed over to me and immediately went to work. Ana took my vitals and Sharon accessed my port faster than a pit crew at NASCAR changes tires. Soon, they had given my Phenagrin, an anti-nausea med that knocked me out for a good hour. In the meantime, they have taken my blood and analyzed it, determining that I was ok for CHOP to proceed. I was a new woman when I awoke and they chastised me for going more than two hours without a snack. So, from now on, my purse will also have to double as a pantry. The trouble will be keeping the kids out of it!
I’m all better now, but I was a real mess. I couldn’t stop crying and I don’t really know why. Everyone else in the chemo room laid a caring hand on my shoulder as they left telling me they knew how I felt. I guess it was one of the first times that I was one of the “poor unfortunate souls” I always see and write about. Hal was great. He held my hand when he needed to, gave me his strong shoulder to cry on, and went running for chick-fil-A when I woke up starving. All the nurses shook their heads and said, “We’ve seen our share, but you’ve got yourself one good husband there, girl.” I know….I know.
The kids are at Andrea Nash’s house after spending the night last night. I know all the kids are having fun and I am able to take a bit of a break. Thanks friend! Next, they will be going to the Markert’s for another sleepover. So Hal and I have the house to ourselves this weekend. Whoo-hoo!!! Our big plans consist of medicine and naps, but we do have one exciting thing planned. Our great friends Jon and Tasha Kaplan surprised us with Bruce Springsteen tickets for tonight, so we will be going downtown to hear the Boss! It will be so good to get out into the world and I don’t think I’ll be the only one donning a bandana.
Gotta run, the clinic is calling my name for fluids and two extra pounds of water weight,
Peace, Love, and the Boss,
Jenny
');document.write('Update: Thursday, July 21, 2005
“Route 66”
Route 66, 66%, 2/3, 0.666666667, the year of the Rat, the birth year of Chris Rock… and Tone-Loc. The percentage of shrinkage the dying tumor in my body has experienced!
Ah, the number 66 has never had a great significance to me. I went to the clinic yesterday (all day) for a PET scan, chemo, and a visit with the good doctor. She shared with Hal and I the results of Monday’s cat scan. She came in grinning and said, “I’ve got good news! Let me give you the exact percentage.” She then proceeded to scribble numbers down on my chart for what seemed like an eternity. Suddenly I wished I had paid more attention in Precalculus, or at least listened to my students as they studied for Dr. Johnson’s class across the hall. Her pen was flying and she was mumbling numbers to herself. Finally, she looked up with a huge grin and said “66%! Your tumor has shrunk by 66%” Now, some math has stuck with me, thank you very much, and even I figured out that was 2/3 of its original size. So I asked her, “So you mean it was a cantaloupe and now it’s…a tennis ball!!!” She rolled her eyes and asked me if I ever thought about anything else besides tennis. (Did I mention that Stefan Edburg was also born in 1966?).
So, we were all thrilled. Chemo is doing its job and my body is doing the same. She did mention to continue to take it easy. She reminded me that taking chemo this fast is very unusual and not many of her patients can tolerate it, so I am officially in a no tennis zone for the rest of treatment. When does fall ALTA start? Just kidding. I have to be really careful of infection and/or injury so that I can keep up the quick pace. Funny. I was always the slowest person in soccer growing up and now I must try to compensate for that in other areas.
Good news, huh? I also had a PET scan yesterday and should get the results Friday when I go in for CHOP (the tough chemo). THAT was an adventure. Want to hear about it? Sure you do… Ok, first of all, I couldn’t eat anything for six hours prior to the 10 A.M. scheduled test. That right there is traumatic enough, right. Oh, it gets better. So, I not only can’t eat breakfast (which keeps me from getting nauseated), but at 8:00, I have to drink “the stuff” again. This time, it’s cleverly labeled “berry smoothie”. I think “gallon o’ liquid chalk promised to gag you” would be much more appropriate. I went in the back yard in case the stuff didn’t stay down and to avoid the curious stares of my family. I guess I should be more understanding of my children. It’s not every day that you see your mom, bald, crying, laughing, cursing, and gagging all at the same time. I figured that after all of this, they’ll be traumatized enough without adding other visuals to their innocent little minds. So, I went outside and downed the stuff. Not as bad this time, because someone mentioned to chill it. I won’t lie, though. I was awful. But I did it.
Next came the actual scan. At 10:00, the tech popped his head in the waiting room and told Hal, “You’ll see her in 2.5 hours.” Poor Hal. Stuck in a hospital waiting room where they’re showing, of all things, ER. So, “Clint” ushers me into the back. We keep passing steel doors marked “Caution!”, and “Radioactive Materials Inside!” and I see people wearing, seriously…yellow protective suits. He brings me into a room that looks a bit like something out of “A Clockwork Orange” with a chair, a stool, a bright light, and NOTHING else in it. He starts an IV (right arm, no go…left arm…got it) and brings in to the room an attaché case. A steel attaché case. He opens it and whips out a syringe encased in titanium steel. It really looked like I had walked on to the set of Dr. Strangelove. He injects me with “radioactive isotopes” so that I will basically glow in the dark during my PET scan. He tells me to relax for an hour, but not to “move around at all”. I am to sit still in the recliner listening to muzak and not move around at all? I mean, how can you not tap your toes to Kenny G or an acoustic version of Stairway to Heaven? So, I make myself think happy thoughts and eventually drift off to sleep.
Part II of the scan…not as much fun. Clint comes in to get me and takes me into the imaging room. I lie down (in the lovely hospital gown) and have to place my hands over my head. Clint then whooshes me through the machine once to measure my exact height. The machine is a 6 foot long tube that looks like the time warp entrance in Stargate. Once I am all the way out on the other side, he tells me it is about to begin. I always thought that I might be a little bit claustrophobic, but this sealed the deal. It is official. I have a phobia. It feel like icing being squished through a pastry tube. A very small pastry tube. They bring you through, toes first, eight inches at a time and then scan. Squish…hum…scan…hum…squish…hum…scan…hum…
The whole time, by the way, I have to remain “perfectly still” according to Clint or else it won’t work and we’ll have to reschedule. The thought of another hour of mindless music helps me overcome my phobia and I stay perfectly still. But it is one of the hardest things I’ve ever done. I honestly feel my “Church Turret’s Syndrome” (you know, the feeling you have in inappropriate places to shout or make sudden movements) coming on strong, but I make it. Soon, my head is being scanned and I am out. I merrily go on my way to chemo, stopping to go to the bathroom, where I see “the sign”:
“PET scan patients: Please sit down to urinate as your waste is now radioactive and may be harmful to others.”
That took the cake. Or the icing.
Gotta go. Today is my last day of feeling good for a while and I plan on taking full advantage of it.
Peace, Love, and Route 66,
Jenny
p.s. Have you looked at my support messages lately? Check out the poems. I figure I’m doing something right if I can inspire a GT grad and a national chess champion to like poetry.
');document.write('Update: Tuesday, July 19, 2005
Oops, messed up on the dates below. Must be the drugs. I know because the Tuesday I was diagnosed was June 7th, the same day that Coldplay\'s newest album came out. To Chris Martin and the boys, please know that X&Y has been an anthem for Hal and me throughout this process, helping us to both grieve and celebrate life itself. Thank you.
');Update: Tuesday, July 19, 2005
"Not Perfect"
Well, people, it has come to this. I am breaking out the early journals. The never-before-seen angry ones. Too many people are telling me that I don’t have to always be strong and perfect. I’m here to let them know that I’m not. Perfect, to me, is a four letter word. So, here’s proof that I’m not…
Many of you don’t know the full story about how I was diagnosed, so let me start by giving you a timeline.
All Spring: Spent three days a week at a sports rehab place (hi Brad!) to work out what we thought was carpal tunnel syndrome and a pinched nerve in my neck.
Mid-April: I was training for the Peachtree road race and started having chest pains and wheezing after short runs (I hate running, so I thought that was normal). The wheezing then continued into each night and I couldn’t sleep. Went to Dr. He thought bronchitis, put me on Bioxin and Prednisone. Kept running.
Mid-May: I finished the medicine but wasn’t feeling much better. I was so tired every afternoon that I would have to nap for an hour after school. I started having more trouble at night. I would wake up and couldn’t swallow. It was the same feeling as when a pill gets stuck in your throat, except nothing would help it go down. Went back to Dr. This time, she said it might be a recurrence of Asthma. Put me on Advair (inhaler) and Prevacid (for acid reflux). As I was leaving the office, she caught me and gave me an order to get a routine chest xray “just to be safe”. Kept running.
First week in June: School let out and the kids were in day camp. Hal was in New York on business. Monday-Wednesday I cleaned my school room and started working on the workbook to accompany Hal’s ScreamFree Parenting. Kept running.
Thursday, June 2: I was feeling a bit better, but still wheezing. I decided to go to the imaging place for that xray, after all, “just to be safe”. People have asked me, what is it that made you go? Honestly, I like to think that it was God. It’s not like I heard an audible voice; I merely found myself there for no real reason. Before the xray, the tech told me not to expect to hear from my doctor until next week about the results. After she took the first film, she called in her supervisor to “check on her film” and then sent me on my way. One hour later, a message was on my cell phone from my doctor’s office saying that they needed to talk to me. I literally was running, so I didn’t get the message until after 4 when the office was closed.
Friday, June 3: I was sitting at Starbucks writing and staring at my cell phone. When the time read 8:01, I called and talked to a nurse. Her words, “There’s a mass in your chest and we need you to get a CT scan…today.” I might have fainted… or cursed…I don’t remember. I do remember driving to their office to pick up my order and calling Mom. It surprised her because at that time, I never called. We now speak every day (hi Mom!). I had to pull over because I was crying so hard. I was terrified and alone. She comforted me by telling me all of the innocuous things it could be, even though I’m sure as an R.N. she knew something was terribly wrong. I then called Hal. The reason I waited was that he was on the biggest business trip of ScreamFree’s existence and I didn’t want to worry him needlessly. But at this point, I needed him more than I could bear and I called just to hear his voice. He offered to fly home right away, but I wouldn’t let him. Sunday would be soon enough. There was nothing anyone could do at this point. I called my lunch date for the day, Bev Dowdy, and instead of a friendly lunch, she got way more than she bargained for. She came with me to get “my cat scanned”. What a friend. We then went to lunch and tried to make sense of all of this. Same routine. Before the tech scanned me, he said that my doc would call me sometime late next week. Kept running. And cut the grass. And played singles tennis (against Margaret Washburn – hi there!).
Sunday, June 4: Hal came home and we held each other and spent hours on the internet trying to guess what could be wrong with me. We also had loads of fun quoting Arnold and saying, “It’s not a too-muh.”
Monday, June 5: Hal goes to work to keep things normal and as soon as he leaves, the phone rings. It’s the doctor’s office. They won’t tell me anything over the phone (never a good sign) and say that the doctor needs to see me at 4:30 that day. 8.5 hours later. I called Hal and he turned the car around. The kids were having breakfast. I hung up the phone, ran into my room, and cried until Hal got home. Then I cried some more. He got on the phone and calmly told the office that we’d be coming in right away and they could find room in the schedule to talk to us. We met Dave Markert and son halfway to drop off the kids. There was not a lot of talking. Dave Jr. gave me a death grip hug as he put the kids in his new car. I started crying again. Dr. met us and gave us the report. There was a tumor in my chest that measured 13x11x8 cm. Roughly the size of a cantaloupe. It was behind my sternum and more tests would be needed to see what it was. He referred us to a pulmonary specialist because the tumor was encasing a major artery and compressing my left lung. He didn’t really know what to say, so he blew smoke our way. His words, “I’m 99.9% sure it’s not cancer.” Yeah. Stopped running.
Tuesday, June 6: Met with Dr. DeMarco, the pulmonary specialist. He was the first to show me the ct scan of my melon. It scared me and I started crying right there in the office. He told me that it was likely a thymoma or lymphoma and he ordered a needle biopsy to find out which one. It was then that I asked, “So, this is probably cancer?”. He gravely nodded his head. I will always appreciate Dr. DeMarco’s frankness and candor. He was the first heath professional (of many I was to meet) that seemed to take me seriously and wasn’t afraid to tell me that something dreadful was wrong with me. From there, I went for bloodwork and preop registration. Hal called our families and both of our mothers made arrangements to come in to town the very next day or two.
This (finally) brings me to my journal entry. From this point on, I started writing everything down and I’ll share that with you. I can’t promise that it’s all roses and scripture verses. It’s more Job-like and tumbleweeds. I will print it in its entirety (I will use either cartoon curse words or British versions so as not to offend) piece by piece. Here’s day one:
6/8/05
So. Here I am sitting up alone listening to the hum of my quiet house the night before my biopsy. Now there’s a sentence I never thought I’d see myself write..
There are so many things I feel and don’t feel right now – it hasn’t quite sunken in – yet it feels like I’ve been dealing with it a long time. I have a tumor in my chest. It is roughly the size of a small melon and it is surrounding a major artery. Other than that, you’d never know anything is wrong with me. I want to keep this journal as a record of events/keepsake for future reference/avenue for me to VENT/and overall safe place for me to be. I’m afraid that if I don’t, I’ll tuck it all away and it will eat at me worse than any tumor ever could.
I’m feeling pretty positive right now until I look at myself naked in the mirror and see it. I can see where the bloody melon is camping out in my chest. It makes one side of me bulge. It is red and hot to the touch. I can see all the veins running through my chest. It is hideaous. I am pissed because this thing might cause me to have a huge scar down the center of my body. MY BODY!!! The one that made it through two babies without a single stretch mark. The one that looks better at 32 than it ever did at 16. &(*&$^@&&@#(*@^%^&$!!!!!
Silly, huh? But honest. I’m mad that I can’t play tennis. I’m getting really good and I love it and every day that I’m dealing with this CRAP is a day off the courts. I am too mad now to sleep or read, but for some stupid reason there is a Bible next to me. I really would rather not look at it, so I won’t.
So that’s it. Day one of my angry journal. See, not perfect. So, for those of you who worry that I’m not really dealing with the sadness or anger, please know that I am – I just don’t usually publish those entries…they need too much cleanup.
Peace, Love, and Imperfection,
Jenny