I Don't Want To Talk About It

This week has been filled with bad news. The night before the marathon, I found out my Hodgkin’s buddy/Pen-Pal Eve in Georgia had her 3-month post chemo PET Scan where she was told her Hodgkin’s had returned. The chemo regimen we both completed did not kill all the cancer in her body, so they will now start her on a different regimen. This of course is a sucker-punch to Eve, but I have confidence she will still come through this okay. It does however leave me feeling uneasy for my 3-month check which will be at the end of August. I am hoping with the addition of radiation, which was not required for Eve, it will help terminate the cancer from my body for good.

The bad news doesn’t end there. In fact, it gets worse. Today my heart nearly broke in half when I found out that my friend Wendy is now in the fight of her life. The metastatic melanoma which they hoped they had knocked out when they removed her entire left lung three months ago, has now presented itself as aggressive tumors on her brain. This is not good news, not good news at all. The 5 year survival rate for metastatic melanoma is, well, I don’t even want to say it out loud nonetheless type it out.

I really don’t know what else to say about Wendy because I am in shock. The thoughts that are going through my head are not ones that I want to write down. It is hard for me to face this reality without being pessimistic at the same time. All I want to do is say a big screw you to cancer today. Stronger words come to mind, but someday my children might read this and I don’t want them to know mommy used the “F word.”

As one could imagine, this has put me in quite a funk, and I can’t be in a funk because this weekend is Cristina’s wedding and I've been looking forward to it for a long time. It’s been one of my goals that I’ve been reaching for to keep me going since January. I will enjoy myself and do whatever it takes to help Cristina have a beautiful wedding. I don’t want to talk about cancer all weekend because this is Cristina’s time and I want to enjoy it with her. Until Sunday, cancer does not exist in my world.

Man on the Run (Part II)

Little did I know that when I met my friend Brock in a bar twelve years ago that he’d someday run a marathon in my honor with my name scrawled on the back of his shirt. This is exactly what I witnessed today. It’s almost incomprehensible to me. Why did Brock do this? Oh yeah, I had cancer, heck, I’m still getting radiation to rid myself of it for good. The whole thing still seems surreal.

Brock ran with the Canadian Prairie Division for Team in Training which raised money for the Leukemia and Lymphoma Society of Canada. He raised over $5,000 for the Society, way to go Brock! The night before the marathon, TNT had what they call the Inspiration Dinner. I met Brock and his girlfriend Ellie before the dinner and Brock gave me a shirt to wear- a survivor shirt with “Honouree” printed across the back which means Brock is running in my honour. (I’m being mindful to spell “honor” the Canadian way since that’s the way it’s printed on my shirt.)

We walked up to the giant banquet room and en route we encountered what Brock called “the red carpet.” Loads of people were staged along a path welcoming participants while clacking noise makers, cheering, and giving high-fives, it was like Mardi-Gras! We then got our food and sat down in the ballroom which seated over 800 people. The room was equipped with two giant projector screens that flashed photos of cancer survivors and cancer victims for whom the runners were running. As we ate our dinner, we heard from two speakers. The main speaker was quite enjoyable as he spoke with passion interwoven with humor. The next speaker was a mom whose infant daughter was diagnosed with a rare form of infant Leukemia in 2007 when she was only 11 weeks old. Her speech began with photos of her baby receiving chemo while a tear-jerking song played over the speakers. I could only take so much and quickly had to overt my eyes to the side wall. The mother told us how they fought for over three years and all the news they heard was bad and continued to get worse. It wasn’t until this April that they finally received good news that her son’s marrow transfer was working on her daughter and her daughter is doing much better. Talk about heart-wrenching. I rarely cry in public and it was all I could do to choke back the tears watching the pain on this mother’s face as she described the ordeal her family had been through- complete and utter hell.

At one point during the evening, they asked the survivors to stand up. This was really weird for me. For one, I have a really hard time drawing attention to myself in large crowds and two; sometimes I don’t feel like I qualify to call myself a “survivor.” At one point in the evening the speaker started talking about the fight people with cancer have to undergo at which point Brock reached out and patted me on the back and gave me a hug. It was a “What? Who? Me?” moment.

Truth be told, I don’t feel like I’ve had to put up much of a fight and I feel unworthy of any glory in comparison to other cancer patients. When I look at children, or people with really bad cancers who fight for their life, there is simply no comparison. Even though my cancer has been a part of my day every day for the past six months, it is simply something I’ve had to endure. I had to show up for my chemo and now I show up for my radiation. I’m just enduring it and going through the motions. Sure, it sucks, but I never have felt like I’m fighting for my life, and I feel really lucky as a result. My cancer has been somewhat surreal for me and perhaps someday I will wake up and say, “Oh my word, I had cancer! What the heck was that all about?” But right now, even though I talk about it openly, perhaps I still can’t comprehend the reality of it.

When I got home from the dinner, Lena and Aurelia were asleep. As I stared at them sleeping peacefully in their beds, tears welled up in my eyes and all I could think about was that mother’s talk earlier in the evening. When I crawled into bed I couldn’t sleep and I finally got out of bed and grabbed Aurelia and brought her into bed with me. I would have grabbed Lena too, but she was sleeping with my mom and I didn’t want to wake up my mom. I held sleeping Aurelia in my arms and I just kept thinking how thankful I was that cancer hit me instead of one of my children. That is something I would not have been able to endure. Eventually Aurelia woke up and that’s when I noticed her hair was dripping wet from my tears.

Today I met up with Ellie and we ventured to the finish line to watch Brock cross it. There were over 26,000 runners in the race and it was hard to get a view of the finish line. But we settled in just in time to see Brock cross with a huge smile on his face. He was really happy because he came in under four hours, a personal goal of his. It was a great feeling to be around thousands of happy people who just put their bodies through hell, but were still smiling. Thank you Brock for making me feels so awesome!

When I was first diagnosed back in January, I told Brock I wanted to run a marathon with him when I was in the clear. All along, I was planning on just keeping it local and doing the marathon in Juneau. Truth be told, the reason I wanted to do it was for myself, to prove that I could do it. Not anymore. After seeing what Brock has done with TNT, I want to run a marathon with TNT so I can raise money for the Leukemia and Lymphoma Society. I truly believe that I will do better and be more motivated if I’m running for something bigger than my own goal. I even know who I want to honor when I run. I will be running in memory of my dear friend and second “dad” Don Goffinet who died of Leukemia two years ago. Don meant the world to me and was the one who taught me that education is important, but not as important as getting out and experiencing the world we live in and learning from real life experiences. Don would be so proud of me for running in a marathon and I can already hear him cheering for me.

I guess this is kind of like announcing my campaign run for election, except I’m announcing my run for TNT! Now I just have to figure out which marathon I’m going to run with TNT. Any suggestions Brock?

No Miracle, No Dazzle

I had no clue what to expect from radiation, so going into it I was pretty unprepared. I had familiarized myself with all the side effects that may occur (skin burns, sore throat, and exhaustion are the lesser effects) and (lung cancer, breast cancer and heart disease are the biggies.) But the actual process of getting the radiation was a complete mystery. My doctor didn’t explain it to me, and I didn’t bother asking. So when it actually came down to it, I was prepared for anything.
I envisioned a dark room with a big machine that shot lasers at me which I would feel burning into my chest. It couldn’t have been further from that.

Here is how my day went. I checked in and sat in the waiting room for a very long time. The waiting room is a terribly depressing place. Oftentimes you are with families who just found out that someone they love has cancer. My first day was no exception and there was a family complete with grandkids that were just told their grandfather had cancer. They were all crying, including the patient’s son in his mid 40s who was sobbing uncontrollably. They kept saying, “He’s so young, he’s only 63.” I guess it’s all in the way you look at it.

Aside from families, there are also the patients who vary in age. I’m usually the youngest as kids who have cancer go to Children’s Hospital and young people like me who have cancer like Hodgkin’s rarely have to get radiation. I guess I was just one of the lucky ones! The patients are usually quite elderly and look like they’ve had the crap beat out of them. Lots of them are in wheel chairs and are usually accompanied by their 40 or 50 year old children who too look like they’ve been run through the wringer. All of us “patients” exchange sympathetic looks to each other and I think we may even be giving each other mental pats on the backs and hugs that say “you can do it!” or simply “I understand.”

I hate the waiting room, but thankfully I rarely have to be there long before I’m told to go change into my gown. After I get my gown on, I’m strapped (actually bolted) to the table by the form they made of my head and chest to hold me into place. Behind my neck, they place a hard plastic neck roll that thrusts my neck out and my head back. The first time they put the form on me I felt like someone was strangling me. I went into panic mode because I couldn’t breathe, swallow or talk. I started moaning and flapping my arms frantically and they quickly removed it. I gasped for air and told them the neck part cut off my ability to breath. They made a very minor adjustment and bolted me back in. It is still extremely painful to swallow and talk, but I just lay there and try my best to meditate and listen to my music. If you lay your hand on your neck and swallow, you can feel your neck pulse out a bit. Imagine lying down and having a weight placed on that spot applying constant pressure. That’s what it’s like for the duration of my therapy. Thankfully it only lasts about 5-6 minutes total, but I still hate it. The first day I was bolted in for an hour as they took x-rays. I will have to have the 45 minute to 1 hour sessions once a week to check on the tumors to make sure they’re shrinking.
After I’m bolted in and they’re sure I can’t move a millimeter, they start the radiation. I wasn’t sure if I should look or not. Years of watching my father weld taught me never to look at the nice bright sparks created by the torch. But, I quickly learned with radiation, there were no lights, nor laser beams, just nothing. In fact, I couldn’t even tell where it was coming from. The only way I know its happening is because of two long beeps that occur when it’s being administered. I guess I wanted more than that. Something along the lines of the sounds and colors the Star Wars lightsabers make as they whiz through the air. That would have at least been something worth getting excited about.

After it’s done, they quickly unbolt me from the table and I’m free to go. On the first day, they had me wait a few minutes while they took pictures of tape they laid over my form so they’d know how to do it the next time. I can sort of see out of my cast, but they really can’t see in to see my facial expressions or my eyes. After the resident took the last picture I mumbled, “Wait, you’ll have to do it again, I blinked on that last one.” It got a good chuckle.



So far I’ve had three sessions, only 25 more to go until I’m done. I’m waiting for the sunburn to start appearing and the sore throat. They say it starts around the beginning of the 2nd week in. We’ll see what happens.

Everything Old Is New Again

This Friday was the first “every other Friday” since January that I didn’t receive chemotherapy. Wow. It felt very odd as I’ve had a standing date with my chemo cocktail for the past six months. The day went by without much fanfare. I did however find myself in the chemo infusion room at Bartlett, this time to give Tamara an armful of rhubarb from my garden that I had promised her. She greeted me warmly and gave me a huge hug along with a video about moving on after cancer, which I haven’t watched yet.

I have my own version of moving on and that’s to return to normal as soon as humanly possible. There are so many things that I missed from my daily life that I just haven’t been able to manage for the past six months. I realize that this whole ordeal is definitely not over as I still have a month of radiation in Seattle, and that will be as far from normal as I could possibly get.

In the meantime though, I can’t help but think of the things I’ve missed. I’ve missed myself a lot; I don’t even recognize myself in the mirror. Since January I’ve gained 20 lbs. This is the most I’ve weighed without being pregnant and it’s hard on me to not fit into my clothes. The other thing I really miss is my hair.

When I first cut all my hair off back in January, people kept telling me how much they liked it and how I should just keep it short. Where I appreciated the compliments, all I could think was, “I want my long hair back.” My hair is growing back, but it’s pretty thin and you can see through the little stubs of hair right to the scalp. I’m still not comfortable taking off my hat in public because I look a little silly. But, it will soon start filling back in and I don’t want to cut it until its back to normal. Okay, maybe I’ll get it slightly “styled” along the way, but I just want it back to where it was when this whole thing began.

My physical appearance will return with time, but other aspects of my life will not. For example, I am down to only one job. A few months ago my job at the state ended. It was grant funded and the grant expired. Then we applied for a new grant to keep the project going and unfortunately, we didn’t get it. So I am down to my opera job which is only part-time. I’d love to work only part-time as I’ve been working full time ever since Lena was born, but I don’t see that happening as daycare for the girls is more than I make in a part-time job. I have a lot of figuring out to do.

Another aspect of moving on from all things cancer is getting the port-a-cath out of my chest. It’s been bothering me a lot lately as it tightens up and sharply pinches me. I had a surgery scheduled to have it removed last Wednesday, but right after Dr. Miller (AKA the Mikado) explained the procedure and said, “See you tomorrow,” he came back in the room and asked me when my last chemo was. After telling him the date, he told me there was no way he felt comfortable doing the procedure when I was entering into my nadir state (where my white blood cell count was the lowest it could be.) It posed too much of a risk and he just didn’t feel comfortable. I understood, but at the same time I was really bummed out. This means I’ll have it removed in Seattle by the surgeon I wasn’t such a fan of. I guess he was okay, but I have a sneaking suspicion his attendees did the two procedures I had performed and they left two careless and over the top scars on me. Also, one of his attendees was really blunt and was the first to tell me I had cancer- before I even had surgery to prove it. He delivered the news casually and bluntly, like I had heard it a thousand times. He even used the word Leukemia in the sentence which sent me and my friend Cristina into near hysterics. I was hoping to never see them again, but I guess I won’t be that lucky.

Addison and I have also enjoyed being back to a family of four humans and two pets. Since October when Aurelia was born, we really haven’t been without a grandma for an extended period of time. The month of December was the longest stint we had without someone here, and even then, my folks were here for Christmas. Where I’ve appreciated having the help, I have to admit it’s been nice to get back into the old swing of things. We even had our spontaneous dance break during dish washing last week. We used to always crank music while washing dishes, which inevitably in our family means dancing! It was so fun to watch Lena and Addison dancing carefree in the living room with huge smiles on their faces. Aurelia joined in by waiving her arms up and down to the beat. And yes, even Yasha participated and was my dance partner. We might have the only dancing dog in the world. She prefers Celtic rock, and sometimes ABBA. Our family normalness won’t last for long as in less than a week, the girls and I head off to Seattle for one month.

So yes, moving on and returning back to normal, or as normal as my life can be. When I told my friend Amelia that I wanted to return back to normal, she laughed and said, “Franny, your life has never been normal.” She has a good point. Maybe returning back to normal for me is returning back to the abnormal. I’ll take that.

Beautiful Day

Graduation Day!

I had my last chemo infusion on Friday and I feel fantastic!! I have only felt queasy a few times so I don’t want to take my medications, but my mom is making me anyway. It is so fantastic to know that I am finished with chemo, finished with shots, nearly finished with all the nastiness that chemo offers, and ready to flush tons of pills down the toilet. Since January I have taken about 360 pills (not including my vitamin D and salmon oil supplements, fiber pills, antibiotics, or the 2-180 pill bottles of Tylenol PM, or the 24 shots to boost white blood cells!) I am so ready to be done being a pill popper and just go back to my vitamins.

While in Seattle I stayed again with my friends Anne and Jeremy which has become my home away from home while undergoing chemo. I love their giant Great Dane Sirus, as well as their lovely and slobbering blind 10 year old mastiff; Bava (means drool in Italian.) Anne actually called the guest room, “your room,” on Friday. It does feel like my room and I love staying in their cute little house that they have poured their blood and sweat into renovating. Jeremy is a wonderful chef and Anne’s laugh can put a smile on anyone’s face. Anne took the day off work to go with me to get chemo and she stood guard as I curled up and took a 30 minute nap in the radiation waiting room between my chemo infusion and my planning appointment for radiation. She was also my official photographer for my graduation day happily taking pictures of me with my oncologist and proudly holding my chemo diploma. I feel lucky to have so many friends in Seattle that I’ve had the chance to go to dinner with, share my chemo day with, and allow me to stay in their house. I am really looking forward to being down in Seattle for a month so I will have more of a chance to see my friends and family.

Dr. Malpass (my oncologist) Truly a man with a heart of gold!

During my preliminary radiation appointment, they fitted me for my “cast.” It was a plastic-like apparatus that they got wet and then molded over my face. They then bolted it to the table and I was trapped. They performed a CAT scan on me while the cast dried. I can’t say I liked it, and in my chemo induced state, I think I remember Anne asking me something about what happened if I there was an earthquake and I was bolted in. Maybe I was just imagining that part, but I have a faint recollection of her asking me that question. It was the type of question Anne would ask since she’s a civil engineer who designs bridges to withstand earthquakes. I was also given a tattoo that is about the size of a pin head. They said they’ll give me more when I come back on the 21st of June. I've actually been wanting to get another tattoo, but little blue/black dots up and down my chest are not exactly what I had in mind.

My Spittin' Image

My mom and I have been talking about our “move” to Seattle starting on the 20th of June and ending sometime around July 22nd. We’re lucky to be staying in a lovely condo provided by my friend Nicholle. Anne is letting us borrow all sorts of baby things so we don’t need to pack extra stuff and I’m preparing the “Honey Do” list for Addison (mostly reminding him not to let the garden and all my flowers die of dehydration.) I’m also trying to get my opera job in order and get things done before I leave, even though I’ll be working from Seattle. I’ve been very lucky that my opera job has been so flexible; all my board members are incredibly understanding and really stepped in to help when needed.

Right now I am counting down the days until I can resume eating the off limit food items. Doctors recommend that people undergoing chemo don’t eat undercooked meat, runny eggs, raw veggies, or moldy cheeses (the lack of blue cheese in my diet is really getting the best of me!) I haven’t been perfect in following the rules, but I’ve been careful, especially when it comes to the cheese and undercooked meats. In a few weeks, I can’t wait to sink my teeth into a medium rare cut of meat and cambozola. Yummy! Oh, and I haven’t been drinking either, so my martini with an olive stuffed with blue cheese will have to accompany my steak. I can’t wait!

I Will

My Aunt Pat died Monday of ovarian cancer. She died on my mother’s birthday. I had a feeling this would happen, a strange premonition that my mom’s little sister would leave us on my mom’s birthday. My mom’s response was quite composed and through her tears she said, “This way she could be with me today.” Strong words that I wouldn’t have been able to muster up.

Aunt Pat had been fighting her cancer for three years. She’d undergone chemo on three different occasions and at one time, her doctors thought she was a miracle for kicking all the cancer out of her body when it had at one time been so incredibly advanced they thought she’d never recover. She was a fighter. My aunt kept her amazing sense of humor throughout all her treatments. She made other cancer patients laugh and get through difficult times, including me.

The first time I met my aunt I was in 4th grade. She was living in Lake Tahoe at the time and my parents left me with her while they attended fish expo. I was nervous about being left with someone I didn’t know, but she quickly learned the way to my heart was through my stomach and started feeding me. She made the most amazing enchilada sauce that we dipped fried chicken in. Fried chicken and enchilada sauce sounds like a totally weird combination, but let me tell you, it was amazing. After she fed me, we watched the Wizard of Oz. She was amazed I’d never seen it, and to this day, I still haven’t seen the whole thing because we ended up talking the entire time the movie was on so I didn’t pay attention to the movie.

There’s a part of me that doesn’t feel like celebrating to the level I should be because it’s hard to celebrate me being cancer free when I just had an aunt die of it, but my aunt would not like that. In her honor, not only will I kick cancer’s ass and tell it that it has no business ever screwing with my family ever again, I will make her fried chicken and enchilada sauce recipe. She would like that.

Poker Face

It’s my last day of receiving chemo in Juneau! Definitely a day to celebrate, but it was hard to get too excited this morning as I tried to get out of the house. I had hoped to get things done last night in preparation for today, but all hell broke out when Aurelia ate a plant leaf and I had to call poison control. Then I developed a migraine so all pre-plans got pushed to this morning. To say our morning was slightly chaotic would be an understatement. Lena went to bed at 10 and woke up at 6 am. Aurelia went to bed at 11 and joined her sister at 6 am. This does not make for hapapy girlies. Aurelia peed through her diaper and jammies and her sheets needed to be changed first thing. I was running around the house trying to get all my work done that needs to be done before checking out for the next four days. Chillcat was flying from wall to wall attacking anyone that dare cross his path. Addison was trying to pack for his bear hunt because he leaves tomorrow AM. My mom who flew in last night was trying to recover from Chillcat scratching her neck and pouncing on her face while she slept resulting in her eyes turning red and bulging out. Meanwhile, Yasha hid like an ostrich with her head under our bed and the rest of her body sheepishly sticking out. Yasha knows when to stay out of the way and remove herself from the chaos. I wish I could stick my head under the bed on certain days and just let the world around me spin out of control.

My last chemo treatment was the worst. I felt sick from the moment I walked into the hospital. I saw Dr. Urata this week because Dr. Fisher is out of town. He suggested I take one of my anti-anxiety pills before going into the hospital and that should help with the feeling of wanting to ralph every time my port is flushed. Tamara is also going to wait a bit longer before starting the chemo and let my anti-nausea meds kick in. We’ll see how it goes this weekend. I am going to try to stay on top of my anti-nausea med and keep a very positive attitude.

I am looking forward to being near the end of the finish line, but there is something holding me back from jumping up and down and running across it, and that’s my Aunt Pat.

I mentioned previously that my Aunt Patti has ovarian cancer. She has done a remarkable job fighting it for years, but right about the time my cancer was diagnosed, hers came back, more aggressive than ever. Aunt Patti is such a fighter that she refuses to give up, her will to live is incredibly strong which is why she didn’t die a few years ago. But sometimes a person’s will to live is trumped by the reality of the situation. The surgeons have said they will no longer operate on her. The doctor has said she will no longer be getting chemo. They removed her food tube. She has now requested to leave the hospital and go home where she can be in comfort. I don’t want to use the word die in comfort because Aunt Pat is still not giving in. Her body may fail her and give in to the cancer, but she never will. I admire that type of courage. She’s been drinking milkshakes lately, so she is allowed some happiness throughout her day. We’re kind of just waiting. It could be days, it could be weeks. Months are optimistic.

Yes, it’s hard to celebrate me being near the end of being sick when someone I care about is near her end. It’s such a crap shoot who will be given a treatable cancer, who will be given a cancer that stays in remission for a long time, and who will be given a cancer that kills them only after a few years. It’s a shot in the dark who will live and who will die. A man my exact age has been getting chemo treatments for sarcoma on many of the days I get treated here at Bartlett. He died two weeks ago.
Until my diagnoses, I only knew 8 people who had cancer 2 are still with us, 5 have left us, and 1 is hanging on as hard as she can hang. Since being diagnosed, my number of encounters of people who have cancer has spun out of control, especially those I know on a personal level. I’ve got Wendy, a childhood friend who has a rare form of melanoma and they’ve given her anywhere from 2 months to an unknown amount of years for it to possibly come back. Then there’s Brynn who has Non-Hodgkin’s, another terminal cancer. My pen-pal Eve in Georgia who I was introduced to by a mutual friend when she found out we both had Hodgkin’s. Eve is cancer free now and done with all her treatments! And lastly, there’s my friend James’s little five year boy old who has been fighting a terminal sarcoma cancer since he was 18 months old. That boy has been through so much chemo that it’s amazing they know his actual hair color is practically neon orange, just like his daddy’s. I didn’t even touch on all the people I meet every two weeks as I come in to get my infusions. I guess my point is, it’s everywhere and no one is immune no matter how safe you play it.

So I don’t really know where I’m going on this. I am super high right now as I’ve been given more meds than I usually take to combat the nausea. I guess I just don’t understand how the cards are dealt in situations like these. For a child to get cancer has got to be one of the cruelest and crappiest deals ever. For brides about to get married, for mothers with young kids, for pregnant ladies, for fathers, brothers, grandfathers, and grandmothers….it’s all the same.

To my mother’s regret and sadness, I’ve never liked gambling because I think it’s a waste of time and money. (My mother is a slot machine queen!) I don’t like it because you never know what cards you’re going to be dealt, so I like to hold my money in my pocket, spend my money on a fancy meal, and watch others take the gamble.

Unfortunately in life, you don’t always have that option of not taking a gamble. So when you’re forced into playing the game, you might as well just stay coy and put your game face on. My Aunt Pat has been my role model for this whole thing. Even though she was dealt one of the worst cancers she could have been dealt, she has remained strong for those around her, wearing her poker face proudly and encouraging other cancer patients to do the same. She’ll do it till the day she dies, even though inside behind the face, she’s already lost the game.

My infusion chair for all my infusions at Bartlett. It wasn't nearly as deary as it looks.

The girls wait for me outside the hosptial.

My infusion nurse Tamara. She is amazing! We both got teary-eyed saying our goodbyes.