I know, I know.
I’m ridiculously behind. Like, REALLY behind. It’s been over a month and since my brain is fried from chemo-juice, I may or may not be able to recall a month’s worth of events (or the conversation I probably had with you yesterday). I’ll give it a shot.
It’s been a colossal month. We started treatment in Bend and fell in love with my oncologist, Dr. Kornfeld, who just so happens to be freaking amazing on every level. He’s personable, lovable, warm, funny and gives the best hugs ever. He gives me high 5′s when I gain weight and gives me permission to eat things everyone else tells me not to eat. He lets me obsess over my blood test results and accommodates all of my incessant questions and premature planning. I love him to pieces. The nurses here too. Seriously, amazing. Every single one of them, we have already fallen in love with. LOVE. Like, little, puffy, hand-drawn hearts appear magically and float all around them when they walk into the room.
So, a couple weeks ago… we decided to do the infamous BRCA test. (we call it Braw-ka). It’s genetic testing. Expensive, but totally worth the peace of mind. My main concern was for Bella, my niece … being the only other female under me on the Burgess side; I wanted to make sure SHE wouldn’t have this to face later, and if it was genetic, we could have her tested early. (Early detection, people!) Also, incase you didn’t know. Breast cancer is kind of like the horrible step-sister to ovarian cancer. I’m actually at high risk to get it. So is anyone I gave birth to. Like, my own boys. Yup, men get breast cancer too. We got lucky. It was negative. (In my heart, I already knew this.) This was not a genetic cancer… it was indeed, “environmental”. Here’s the quintessential piece of token cancer’y advise you’re obligated to get from me … if you think something is wrong, it probably is. Who cares if you sound like a neurotic hypochondriac. Pain is your body’s way of telling you something is off. Listen to it. If you have a lump, get it checked. If you have a pain, ask about it. If they don’t listen to you, ask again. If you feel weird, ask for a blood test. If your lymph nodes are swollen, ANYwhere… have them checked.
**Note to men … those are NOT your lymph nodes. So, stop it.
Roughly two weeks after my first chemo, I knew my hair would start to be an issue. So… because I’m kind of a control freak, I took the reigns on that one. The first phase was just cutting off most of my hair to a short bob until we were ready to take’r down. Then we rallied the troops and had a head shaving night at Salon Envy. Ben came with his gear and we documented the night which ranged from giggles, to tears, to weeping and back to giggles again.(there is a video coming and we’ll put all the images up at that point.) I will say this… it was most definitely the most emotionally traumatic part so far. I didn’t think I would care about it until the moment JUST before we started, and I let out the most primal gasp and exhale of held in tears. Everyone just stopped and let me have it. I pulled myself together and that was that. Done.
The boys thought it was pretty cool.
A question I get a lot right now is… “What does chemo FEEL like, does it hurt?”
Chemo days are a trip. I have to gear UP for them. Now that I know what to expect, I don’t get anxious about it anymore, but I do dread them. Those days are LONG. They are boring. My tribe is there and I’m constantly worried about THEM being bored. Being tired. Being hungry. Being uncomfortable sitting in those ridiculous hospital chairs in that tiny little room they give us. My dad never brings anything with him. No books or magazines. No ipad. No computer. It bugs me.
But chemo itself is just sucky. It’s 10 hours of infusion. That means, dripping a long, slow drip of craptastic into my uncooperative veins after maybe 4 attempts at an IV. The chemo itself doesn’t hurt. But the process is uncomfortable. Once they start the stomach port infusion, I’m usually pretty full of fluid. I get REALLY uncomfortable around hour 7. By then I’m usually 5 bags of fluids in. I’m visibly swollen and feel ridiculously full. That night, is usually pretty uncomfortable and I’m typically pretty wired from the steroids they pump in that day. By the next day, I’m tinkling a lot. Like, lots. But the side effects don’t typically kick in until day 2 and they are really bad on day 3 and 4. Typically, I feel as though I can’t move without help. As the treatments have gone on and the cumulative effects of chemo have caught up with me, it seems like each infusion is a tad bit worse. I usually wake up feeling like I have the worst hang over ever. The side-effects usually kick in and every bone in my body usually aches. My skin feels flu-ish thin and paper-fragile. My muscles usually throb or burn a low, steady pain. It’s weird and kind of indescribable. Any strong smell is usually too much. It reminds me of pregnancy. I get intensely nauseas over brewed coffee or the smell of meat cooking. I usually feel weary tired but the kicker to the steroids is they make you unable to sleep. Nothing really helps either … not really. The steroids make it bearable, I’ve tried smoking pot and hate it, eating usually helps but the nausea makes that pretty hard, all in all … the days following chemo are pretty painful. I remember my dad came over one day, during the last double-dose we got, and I was on day 8 or 9 of being in bed straight, and I just started crying like a little girl. It just hurt THAT bad. Every so often, my mind literally just goes blank and I have trouble even finishing a thought or a conversation. The most recent side effect has been thumping in my ears… kind of like the sound of a distant helicopter… not continuous, but frequent enough to be annoying. The symptoms that come with each treatment only last for a few days – longer as treatment goes on – but for the first 6 or so treatments, those post-treatment symptoms would only last a week or so, depending on how much chemo I get. The last round was harsh, but the single dose I got after it was great! I just never know what to expect. Since my treatments are only a week apart there isn’t much time between to feel good. When they give me a week break, I actually get a good solid week of feeling good. Those days, are AWESOME. Like nothing hurts! I could think and actually REMEMBER conversations and I didn’t need a nap! Every treatment so far, I have a moment – after the side effects wean and I started to feel normal again where I just marvel at how good it felt to feel good. To feel N O R M A L.
On these days, I actually feel guilty. Guilty for leaving my bed, for putting on my new fancy wig, for having plans, for drinking a beer, for being out at a restaurant, for NOT being sick. Like, I have cancer… I’m not allowed this. Some people NEVER get to feel good.
I will and AM letting go of everything else, all of it… (you know… the ick and muck we all carry around like the initial swellings of grudges and anger and resentment and self-protection and heart guards and walls and…. and…) and clinging ON to the GOOD. There is SO MUCH GOOD.
I keep asking myself, have I lived enough IN the moment? In THIS moment?
To love life wildly enough to fight FOR it.
“Joy is always a function of gratitude — and gratitude is always a function of perspective. If we are going to change our lives, what we’re going to have to change is the way we see.”
Cancer is changing the way I see. Or maybe it’s God, USING cancer to change the way I see?
Difficult, but NOT impossible.
Please allow me to preface the following by saying: I don’t text, nor tweet, nor blog. I don’t have a Facebook Wall and if I send an email, it is usually a forwarded forward. So as not to seem hypocritical, the following is posted due to the love, beauty and grace of my wonderful bride, Patti.
Patti and I were relaying the day’s adventures on August 30, 2011 when the phone rang. A call from my son Nathan was not uncommon. After his usual obnoxious greeting, he relayed to me that we needed to head to the hospital right away, “Jennifer may have cancer.” Little did I know, that call, would change my life forever. Having to watch my daughter endure a hysterectomy and go through chemo therapy, I felt terror!
I hung up immediately and looked at Patti with a look that only a deer starring down two headlights at 60 miles an hour could appreciate. “What’s wrong?” was her response when she saw the tears in my eyes. I don’t recall my answer. We were in the car instantaneously. After traveling the 6 mile trip to the hospital at speeds that should have alerted any first responder worth their salt, we arrived at the Emergency door.
Even though the waiting room was filled with well-wisher’s, I saw only my daughter, the little girl who wanted me to fix her “booboo.” A kiss and a band aid wasn’t going to fix it this time. I didn’t know, that moment would set into motion, a tear filled month to follow and every moment would be consumed with the emotions of her struggles.
On September 1st, along with Jennifer, Jake and Jen’s sister in-law Kacy, we met with the doctor to hear the results of the CT scan and blood work. The doctor entered the exam room only to break out in tears. “You have a mass on your ovaries,” was all she said. The room went silent. Our worst fears were confirmed. . I felt this couldn’t be happening to her, she is so young and strong. There is no family history. I wanted the doctor to pull it together, thinking, “She doesn’t need to see the doctor in tears.”
After a long pause, we asked about our options.
We decided on surgery with an aggressive attack on the enemy that was living within her. Jennifer named the alien…”Herm.”
September 6th, 2011 was a day that lives in my less than 3 megabits of memory forever. After the three hour trip from Central Oregon to Portland’s Providence Hospital we were directed to the surgical waiting area. We were pleased to see other family, friends and well-wishers, 20 in all, and more to come.
We were ushered alone or in pairs to Jennifer’s Pre-Op room. I was second as I recall but in the moment, does it matter?
Jennifer and I had a spiritual and loving moment prior to her surgery. As I watched the anesthesiologist insert needles and tubes into my daughter’s body all I could do was pray. I hugged and kissed her and was very apprehensive at leaving but knew others wanted to see her. When I left the room I told the nurses to take good care of my little girl.
After the surgery which seemed to take a lifetime, we all awaited the surgeon’s surgical report. “All went according to our surgical plan,” the surgeon stated matter-of-factly. The packed consultation room exhausted a simultaneous breath of relief. I even hugged my ex-wife (Jennifer’s mother) which 20 years ago would have been at best unthinkable.
Since that day, Jennifer has had ups and downs with attitude and how she viewed her treatment. I am proud to say that today we have been successful in moving Jennifer’s treatment from Portland to Bend, removing the tedious 3 hour one way drive weekly for chemo. We have found a wonderful local oncologist willing to take her case.
Jennifer is currently in her second round of chemo which will probably last through February 2012.
I continually pray for my firstborn every day, all day, but have turned her over to the Great Healer, our Lord and Savior Jesus Christ.
Today I see Jennifer as a beautiful, strong and courageous, entrepreneur determined to fight the evil within. I am extremely proud of the woman she has become. God has blessed her in so many ways. We will beat this!
What I have always told my children is, “If you only have one true friend in life you are truly blessed.” Jennifer is blessed beyond measure. Thank you to Niki, Brandy, Cheryl, Elaine, and many, many more. Thanks also to the 5,000 plus people supporting her daily via email and meals and fundraisers. I also thank my wife Patti who has been at my side through it all. And Jake. He has gone above and beyond all our expectations. He is a wonderful man and we love him.
God blesses those who love Him.
Bill Burgess (Jennifer’s Dad)
It was a huge mixture of emotions to go visit Jen in Oregon last week. I knew that I wanted to be there for the first round of chemo, but I honestly didn’t know what to expect. I was scared, nervous and oddly excited to see my new family away from family.
I admit that I was shocked to see how thin Jen has really gotten. At 6 feet tall, her bony little arms and legs truly startled me. She still looks as gorgeous as ever, but up until now, it’s been kind of easy to pretend that she’s not sick. Not anymore.
The drive to Portland was long and quiet. Jake and I in the front and Jen snuggled in the back. Everyone was lost in their own thoughts. None of us knew what to expect.
The cancer center smells funny. Like a hospital, but more chemical-y. You can’t trick yourself to think it’s a hotel, it just has a medical feeling. There are big reclining easy chairs all over the place, and lots and lots of old people. I think that surprised me the most, so few younger people. Jen and another girl were the youngest there. It’s weird to think at 36 that we are considered young, but it’s true. We have a lot of life yet to live.
I felt very honored to be able to be included in the conversation with Jen’s oncologist. It was a serious talk. The chemo treatment is aggressive because ovarian cancer likes to come back. What they cut out during surgery WILL grow back if the chemo doesn’t kill it. So Jen needs to do chemo each week, for two weeks on, one week off. For 18 weeks. It’s a LOT. She does an IV as well as a port in her abdomen. They need to fill her abdomen with chemotherapy to kill all the cancer ‘flecks’ in there.
Jen is amazing. She doesn’t flinch when they stick her with a needle. Even in her stomach, which made ME wince. The only thing that she was affected by was the numbing spray! The chemo took hours and we were the last to leave. We chatted, joked, texted and were sometimes just quiet. I’m so happy that she has such a good support system with Jake, her dad and Patti there. They are just as strong as Jen is, which is important.
The drive back home was uncomfortable for Jen. Her stomach was distended from all the drugs pumped in there. She just felt ‘full’. It made for a very long day – 6 hours in the car and 7 of chemo. I honestly think that will be the worst part, especially with winter coming and having to travel through the mountains.
The next few days were spent watching a lot of Bravo and the E! channel. Jen introduced me to all her favorite shows and when she wasn’t sleeping, we giggled at all the silly reality shows. Dirty Soap anyone? I’m addicted now, and probably annoyed Jen with all my ‘who’s that?’ and ‘what is she mad about?’.
I just puttered around the house. Played with the boys, talked to Jake. He made me watch American Restoration one day but I don’t understand why you’d want to make a cool looking old wagon into a brand-new looking one!
On my last night, Cheryl came over and made tacos for everyone. We had some beers and hung out and just talked. The boys spent about an hour making the most AWESOME Angry Birds restaurant with menus, fancy table setting and actual food. I got the ‘special’ cupcake because Cohen and I are getting married someday.
My last day was bittersweet. Jen had made it through the chemo without throwing up. She was actually awake and feeling a bit better. I was so happy for those things but so sad to be leaving. I love my friends and family in Calgary, but right now my heart is in Oregon.
I’m thinking back to a week ago this time, and at how very low I was, how small I had let myself get and how I had allowed myself to spin in my own reality, literally bowing down to anything and everything bigger than me. (which right now, feels like almost everything.)
My dad came over unexpectedly (probably because I quit answering my phone for days) the day before my first chemo round, walked into my room, and after I melted into a weepy puddle just at seeing him, ever so subtly, took on the role to kick my ass. “Get dressed, come ‘on, let’s go.” As we walked towards the stairs, he stopped me to look at a picture of me and the boys hanging on the wall that my friend Marla took of us in Florida 3 years ago, big giggling smiles, unaware of the trials ahead we were racing to, and he said “THIS is why… THIS is why you’re fighting.”
After that day of sitting in a diner booth, cramming eggs and ham down my throat at his every scowl, I just thought … “ okay, here we go.” I didn’t get all brave or upright. I didn’t stand up and proclaim courage and endurance. I just quit crying. What right do I have to complain about anything? I am not owed a damn thing and I deserve so, so much less. I’m sure we can make ourselves either happy or miserable. The amount of work is probably the same for both.
I think about what “joy” means a lot now, and where it comes from. He says to us …”that my joy might remain in you, and that your joy might be full.” Where have I forced my joy to come from? What have I focused on and allowed to feed my well of happiness that was wrongfully assigned? How often do I feel entitled or due? Whether it be a certain type of car, or those perfect pair of jeans or that one and only person that was made just for me, or that promotion at work, or going through my day without a grievance or complaint. “If only I had….”
So, this last week, I just started working on my freaking attitude. That is ONE thing I have control over. It doesn’t mean I poof into a realm of non-fear. (I’m freaking scared!). It doesn’t mean I’m not going to feel like crap.
(I do!) It just means I don’t have to feel powerless and anxious and full of worry. I can give that up, because He tells us to. Oh, how it’s the lesson of this season for me.
Ok… so. Chemo. After I just wrote a drawn out yawner about joy and non-complaint…. chemo freaking sucks. I keep telling myself it wasn’t as bad as I had myself all built up for, but I had noooooooooo idea it would hit me as hard as it did. So here’s the gig… since I have 3c ovarian cancer, that little “c” means I have tiny little specs left in my abdominal area after the surgery, scattered all over. Their best attack at that, is to literally pour chemo all over my guts. Yes, they actually roll me around to make sure it gets all over. So, I have this needle in my stomach and an IV in my arm doing normal infusion. For six hours. It’s kind of a double hit. Most just have the IV. But alas, they duped me cool enough to get the IV and the IP… um, at once. I’m going to admit, it’s not awesome. The exhaustion that hits is like a train, like a Nyquil train and the feeling that takes over your core is like a wooshy, heavy swirl that is just enough nauseating to make every smell and every food repulsive. Subsequently, I didn’t eat for 3 days which is not what I needed whatsoever. Around the 4th day, I finally started feeling able to sit upright and a smoothie even sounded appetizing. Success! It didn’t kill me. Now, for the next hit…. in two days.
Thank God, Brandy was here. With her bouncing curls and her knee high socks, she was this ray of sunshine that just appeared and made sure I was giggling and happy. She made the long trip here from Canada, then to Portland and back and sat bedside with me while I was literally dead asleep for 3 days. I think she may have seen my eyes open 4 times. She played with my boys and kept Jake entertained and kept my parents giggling. Perfect.
Jake has been awesome taking on the full load of just about everything. Kids, school, houses, errands, my meds… his mom has been here to help when he’s working and we’ve had an endless parade of meals and help from friends and beyond. SO, incredibly blessed and grateful.
What I’m praying for now, is for grace and mercy from my poor clients who have been waiting on me to finish their projects, the ability to get caught up with work and the strength to start planning ahead for new design work as it’s what I’m limited to for now. Praying God keeps my hands free and nimble from neuropathy so that I’m able to and that projects presents themselves as He sees fit. For understanding in the things that I don”t understand. For the ability to rest in things I”ll never be able to control.
….difficult… but not impossible.
I’m sitting here a’top my billowy white bed realizing today is October 12th and knowing I’m only one day away from starting this battle. October 13th has been looming. It just has. I’ve felt like anything but a powerhouse. In my mind, sadly, it hasn’t been the start of all this… I feel like I’ve been viewing it like the end. Needless to say, I’ve had a rough couple weeks. I’ve really let my mind play some yucky tricks on me and with that, I’ve spun in some really negative directions. Spending the time alone that I have, I’ve reached down pretty deep. I’ve analyzed a whole lot, places I haven’t let myself look at for a long time and I’ve promised myself that I’d be transparent about what this looks like. From where I sit. For me. For my “tribe” and for anyone else who has to go through this someday. The thing about digging deep and being visceral… is the stuff that rises up from learning lessons the hard way and not knowing it until you’re looking back ON it. Looking back at things that were selfish or misguided or just plain stupid. I look around my loft and it tells a story of where I’m at right now. Doesn’t everything in our lives? The people who are in our lives in that chapter. The things the change. The things that remain unchanged. The bits in our refrigerator. The clothes hanging in our closet. The crumbs on the kitchen counter. The coffee mug left from that morning. Isn’t it all telling a story?
I look at myself in the mirror and I don’t recognize me. My body is small and tired. It’s weak and fragile. It’s been torn apart by knives and medications. It’s not my own. I started letting my mind and heart duplicate the image of what my body looked like on the outside. I have felt shredded. Torn apart. Angry. Compromised. Discarded. Frail. Small. Fragile. Weak.
Weak in spirit.
Weak in strength.
Weak in power.
Weak in courage.
Weak in self.
And amidst the constant visitors and helpers and friends and family… I feel completely alone.
This is not who I am. I want to be a warrior.
You know how when something breaks… and you’re pissed and you glue it all back together to salvage it, because you just can’t bare to throw it out and you finally get it all pieced back whole, but you can still see all the slivered lines? The fault lines. The broken pieces. I kind of feel like that right now… that I’m still whole, I’m still here…but just barely. Just hardly in one piece and only because of the glue … the goop in all those lines that keep everything from coming apart, into pieces. My family is my goop. My friends are my goop. The amazing support streaming in from a thousand places on this globe are my goop. Thank GOD for them. They are keeping me whole.
There is a song by one of my favorite groups, Needtobreathe, called Second Chances.
I listen to it a lot lately….I feel like it’s speaking on how I’ve felt this week.
All my past is color
Placed inside my hands
Empty is the canvas
Patiently I plan
Stars are bright above me
That’s not where I am
Greens will be behind me
Blues will make the man
I can’t help but fear I’ve done this wrong
Cause seldom second chances come along
Greys are all around me
Fading into black
Stars were bright above me
Won’t you bring them back
I can’t help but fear I’ve done this wrong
Cause seldom second chances come along
If time can break us, will it make us strong
Cause seldom second chances come along
My sister-in-law, Kacy (we call her Sissy) … said something to me the other night while laying next to me buried under my covers. “Jen, you fight for EVERYTHING. For EVERYONE. Everything you believe in, you FIGHT for. You stand up for it all. Why aren’t you standing up for YOU right now?”
Her words matter to me.
I didn’t even know what to say.
I knew this was going to be hard. I knew I’d start out with vigor with the adrenaline of the first week, the surgery and the mind spins of survival. I look at my boys every single day and internally scream to myself…. “I DON’T WANT TO MISS A MINUTE OF THEM!!”
Then I get angry. Then the weakness sets in. It’s a vicious cycle that’s consumed me this last week. I feel like I don’t have a right to feel that way. That it’s up to me to push this down. And it’s not even so much in being sick, but all the peripheral crap that falls in at the same time. The unreal timing of it all. Withstanding the disappointment. The things or people you thought would be there. The financial pressure and worry by not working. The stress on family and the decisions that have to be made. I feel like I’m being a let down by being scared. God is doing some major stuff in me right now. Why do I fight it so hard?
It begins tomorrow. I have found a subtle and buried beauty in this darkness. No one else can see it right now but me. It’s mine.
God, brace me with your strength tomorrow. Give me all you have.