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There are a few people who asked me to keep writing a blog, so here it is:

abnormal is normal for me

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Waiting For My Real Life To Begin

Nine months ago during a routine six week post-delivery check up after having Aurelia, Dr. Fisher noticed I had a large lump on my neck. She ordered an ultrasound which led to a CAT scan, which led to a fine need biopsy, which two months later led to a surgical biopsy in Seattle, which led to me being diagnosed with Hodgkin’s Lymphoma Cancer. Nine months ago, my life changed dramatically, and it will never be the same, which I have now learned, isn’t always a bad thing.

During the past nine months I’ve had three surgical procedures, two PET scans, ten doses of chemotherapy, and seventeen radiation sessions. I’ve met with eight different doctors in three different states, five infusion nurses (Tamara was the best), and countless nurses and technicians. I’ve met dozens of people with cancer, and in the last three months alone, I’ve lost my aunt and one of my best friends to the disease.

Cancer Sucks.

I got home on Tuesday night after being away for a month. Not much has changed. The garden looks almost the same because nothing has neither died nor grown due to the lack of summer in Juneau. Addison did loads of work on the house and the kitten turned into a cat. Like me, the girls are excited to be home and back to our normal routine life, a life where mommy is done with treatments.

I may be done with treatments, but everything is not behind me. For the next two years I will need to meet with Dr. Fisher every three months, and then every six months for five years after that. She will check my lymph nodes to make sure they are not swelling and she will need to give me an overall physical examination. I will also need a CBC, CMR THS and ESR every three to six months. In six months, I need to have a CAT scan. If that comes back clean, my oncologist said I should never need another one unless I start having cancer-like symptoms. I will also need a yearly chest x-ray and I'll need to start doing mammograms earlier than most women because I am now susceptible to breast cancer after being exposed to radiation. Additionally, I'll need to start getting pneumococcal and flu vaccines regularly. I also learned that in a year to five years, my thyroid will quit functioning and I will need to take thyroid medication for the rest of my life, another issue caused by radiation. Oh and lastly, I'm at an increased risk for coronary artery disease. Phew, did I get it all? After my oncologist told me this he said he would not need to see me on a regular basis and I quote, "It is a real positive to be fired by a medical oncologist and I am very optomistic you will do well."

I may be able to move on to my post-cancer life, but the reminder of it will always be there. It’s not something I can easily put behind me and be done with it for the rest of my life. My focus will now shift from beating it, to now staying on top of it. I will do my best not dwell on fear that it may come back, but instead try to continue a healthy lifestyle and keep positive. I can’t say I won’t get nervous each time I’m awaiting my test results, but I will at the very least try to stay positive.

So what’s next? For starters, I’m planning my Juneau celebration party. It will be August 21st, 7 PM at the Juneau Arts and Culture Center (old Armory.) I hope many people can make it and help me celebrate. If you want to come in from out of town, we can stack people in like sardines at our house, or find other places for you to stay. The more the merrier. Aside from party planning, I’m eventually going to have to start training for the marathon. I gotta say, beating cancer wasn’t all that fun at times, but I can honestly say, I’ve feared the looming marathon more! For a girl who has never even run in a 5K race, a marathon is going to be quite the challenge. Brock suggested we run the San Francisco Nike Women’s Marathon in October of 2011. I’ll be seeking donations for the Leukemia and Lymphoma Society soon, so if you’re interested, please let me know.

And in the near future, Addison and I are going to crack open a bottle of Veuve Clicquot my favorite champagne. He bought it for me Christmas of 2008, right before I found out I was pregnant. Due to pregnancy, breast feeding and then cancer, we still haven’t opened it. I think now is the time, and there’s definitely cause to celebrate.

Aside from celebration parties and running, who knows what the next year will bring for me. I am open to positive change. The past nine months have been a wild ride, but at the same time, I feel that aside from the possible future side effects of radiation, I am a better person as a result. I find myself happier, much more appreciative of everything I have, and willing and able to make positive changes in my life to make things better for myself and my family. Also, my hunch that I have the most amazing family and friends was proved to be correct. My family and friends held my hand during this entire time and wouldn’t leave my corner during this fight. I thank you so much. I will always be appreciative and indebted to you all.

I guess this is it; dare I say I’ve reached the end of my blog? Ending it would mean that I am thinking positive and that I won’t need to share the trials and tribulations of having cancer ever again. Thank you so much for reading and keeping me going. I really do hope that the next time I do go to Seattle it really will be to just go for the Piroshkies, and to see friends and family of course.

PS-Thanks to all the musicians/bands who gave me great song titles for the titles of my blog entries:

Waiting For My Real Life To Begin- Colin Hay
Today The Suns On Us- Sophie Ellis Bextor
Hasn’t Hit Me Yet- Blue Rodeo
Fall Apart Again- Brandi Carlile
Power of Two- Indigo Girls
I Don’t Want To Talk About It- Rod Steward
Man on The Run- Cowboy Mouth
No Miracle, No Dazzle- Blue Rodeo
Everything Old is New Again- Barenaked Ladies
Beautiful Day- U2
I Will- Beatles
Poker Face- Lady Gaga
Only a Dream- Mary Chapin Carpenter
I’d Rather Press On-Gordon Lightfoot
Reasons Why- Nickel Creek
Closer to Fine- Indigo Girls
Spring- Cheryl Wheeler
Nothing More's Gonna Get In My Way Supergrass
Fast As I Can- Great Big Sea
What Went Wrong (In Your Head)- Supergrass
Hope Alone-Indigo Girls
Where is My Mind-Pixies
Wisheries- John Gorka
Always Getting Better, Blue Rodeo
Sugar, Sugar- The Archies
As Cool as I Am – Dar Williams
Come Back Down – Toad the Wet Sprocket
Thank you – Tori Amos
Vacation – The Go-Go’s
Here Comes the Sun – The Beatles
Man on the Run – Cowboy Mouth
Sounds Strange –Captain Tractor
All I Want – Toad the Wet Sprocket
The Luckiest – Ben Folds
It Happens Every Day – Dar Williams
Pushing the Needle Too Far – Indigo Girls
We Didn’t Start the Fire (Okay, so maybe I did.) – Billy Joel
Who Needs Sleep? – Barenaked Ladies

Today The Sun's On Us

At Wendy’s memorial on Saturday, her step-dad Dale told everyone that he’d been seeing a lot of yellow butterflies fluttering around since Wendy’s passing. I couldn’t really hear everything he was saying, but I am pretty sure he said he believed the butterflies were her spirit being present around us. I’ve always thought those types of things were coincidences or us trying to hobnail pieces together to make ourselves feel better. But, I have to say I do find it interesting that the moment Melissa and Desi (who are mutual friends of both Wendy and I) arrived for the picnic today, a yellow butterfly buzzed us and came right into our circle, did a fly by and then flew off. Later in the day a jogger ran by the picnic with a shirt that simply read, “Team Wendy.” I may be grasping at straws to feel connections with my departed friend, but I have to say, it was pretty darn awesome.

Speaking of awesome, wow, what a picnic! Twenty-one adults, seventeen kiddos, one dog, and I swear a near twenty pound chocolate cake made by Addi’s Aunt Jeanne gathered by Lake Washington for my celebration picnic today. The majority of people were classmates of mine from Ketchikan, some of whom I haven’t seen in over fifteen years! People drove from all over Washington and as far as Oregon and boy did I feel special. I tried to spend time with everyone who came, but found it hard to spend as much time with people as I wanted to. Five hours flies by fast when visiting with people one hasn’t seen in a long time. For me, the best part was watching our kids play with each other as if they’d known each other for years.





Strangely enough, getting cancer had its benefits. For one, my girls got to spend a lot more time with both their grandmother’s, which was beneficial not only for my girls, but for their grandma’s as well. Second, it put me back in contact with a lot of friends I had lost touch with over the years. I’ve also been able to spend time with friends that I only see once in a blue moon. And, I got to see Wendy twice before she died. It’s got me thinking that it’s unfortunate it had to take me getting cancer to help me see the value in seeing my friends and family more often, but it’s something I’ll never take for granted again.



My weekend started out cloudy and full of tears, but it ended with sunshine and smiles. I hear the weather has been cruddy in Juneau. Well get ready folks, because even if it’s cloudy, I’m bringing enough sunshine to go around.

Hasn't Hit Me Yet

My friend Elizabeth flew in from Minnesota for the week and it really couldn’t have been at a better time. If she hadn’t of come, I probably would have holed up in the condo and swam in gloom and doom until my fingers were pruned.

Elizabeth and I met in college while doing a show together called Starmites. It’s a terribly written musical that takes place in outer space. I played the role of a Nazi Banshee and Elizabeth was the leader of the Banshee pack and her character’s name was simply Diva, which I might add really fits my friend. It’s a title she is okay with and we lovingly call her, “Diva E.” In auditions, I was the plain no make-up girl in a t-shirt, jeans and running shoes with my hair pulled back in a pony tail, and she was the girl with spandex, character shoes and hair as big as all the members in an 80s hair band combined. When she walked into the auditions (I swear she kicked the door open and the theme from Fame played) all I could think of was, “Please don’t sit by me, please don’t sit by me.” She sat right by me and we became the best of friends. As my dad says, Elizabeth is the one who taught me how to be a girl. She showed me how to do my makeup, fix my hair and taught me that it’s not a mortal sin to wear a dress. Lena’s middle name is Elizabeth, after her.

It is impossible to be sad around Elizabeth. Within an hour of Diva E. landing, she and Mini E. were singing all the songs from Annie and Sound of Music, with the perfect choreography to go with each song. I was laughing really hard and enjoying the show watching while Aurelia yearned to join them. Elizabeth accompanied me to my radiation in the mornings and she was with my on Wednesday when I walked in and the radiation team told me “Congratulations, it’s your last day!” My response was simply, “No it’s not.”

Back in June was I was given a calendar with all dates and time slots for my radiation and it went until July 20th, so when they told me on July 14th that I was done, I was a bit confused. It turns out they were right. There was a miscommunication between my doctor and the coordinator and I only had to do 17 treatments, not 20. Elizabeth and the radiation team were jumping up and down celebrating and I just stood there looking really confused, and most likely really stupid. I wasn’t ready to be done. I hadn’t mentally prepared myself that after 7 ½ months of treatments, that today would be my last day. I can’t really describe what I was feeling. There was a combination of shock, happiness, relief and fear. Yes, fear. As they bolted me into position, I was choking back tears as my mind flew a million miles a minute. There was relief that it was all finally over, but also fear that kept coming up in my head. What if this comes back some day and I have to go through all this again? I tried to push the thought out of my head, but it wouldn’t budge. And of course, I thought about Wendy.

When I came out of the radiation room, the team and Elizabeth clapped and cheered for me. They had me ring a bell three times to signal that I was done with radiation. I also received a certificate of completion.

Elizabeth and I celebrated by heading straight to Piroshky, Piroshky. I then went and bought Lena a dress. On all my trips to Seattle for chemo, I always bought a dress to bring back to Lena as a gift. For some reason, she calls them her “Alaska Airlines Dresses.” I wanted to get her a “Celebration Dress” to close out this chapter for her too. Then we went to Nordstrom’s where Elizabeth insisted I get a makeover at the Smashbox makeup counter. The makeup artist was super sweet and even “styled” my short hair for the first time since its grown back.

We ended our day by venturing up to Swedish Hospital to meet and visit with Janice who is a new friend of mine. She is currently undergoing chemo to fight cancer and is an avid reader of my blog. Her cousin Travis who I’ve known for years turned her onto my blog so she would know others are going through what she is going through. It was weird being back in a room filled with all the smells and drugs that made me sick at one time, but it also felt good being there as living proof that those drugs work and that it was all worth it. I look forward to keeping in touch with Janice as she too gets to celebrate her remission in the near future.

I’ve been asked a lot if my picnic is canceled on Sunday due to the fact that Wendy’s memorial is on Saturday. I’ve really thought hard and long about it. I can’t say that I’ve been in much of a celebratory mood, but I finally came to a conclusion. I am here, I am alive. People could be coming to my funeral instead of a party to celebrate the fact that I’m still here. The plain and simple fact of the matter is, I’d rather being going to a party with Wendy than without her and I hope my friends feel the same way about me. Too many times we don’t spend enough time in our lives celebrating our friendships and oftentimes, it’s too late. It’s a good lesson to be learned- we need celebrate our friendships and good health and the plain and simple fact that- we can.

With that said, Saturday is going to be hard. Even though I am aware of Wendy’s death and I’ve cried every day since Sunday, I can’t say it’s really hit me yet. None of this has hit me. I’ll still expect to see Brian on the Pacific Queen, I’ll still expect to hear Wendy’s loud voice booming through the crowd on Saturday, and after 7 ½ months, I can’t get used to the fact that I am done with all of this. When things are so ingrained in your life, it’s a bit of a shock when it’s all suddenly gone and over, whether it was welcomed or not.

So what’s next? I have Wendy’s memorial on Saturday, Sunday I’m having a Seattle celebration picnic (12:00 at Madrona Park,) and on Monday I am meeting with both my oncologist and my radiation specialist to discuss my future as a survivor in remission. Then finally, Tuesday I get to come back home to Juneau!

Fall Apart Again

Wendy died today. I found out first on Facebook which is not the way I want to find out that one of my oldest and dearest friends has died. I wonder who takes pride on broadcasting someone’s death less than 20 minutes after they die, before her close friends even have the chance to hear about it. It was so unfathomable that I had to call my friend Melissa to confirm it. Unfortunately, Melissa confirmed exactly what I read on Facebook.

This comes less than 24 hours after hearing of a close family friend’s death who died on his boat just yesterday. And less than 12 hours since I called 911 because Aurelia was choking and my mom and I couldn’t get whatever was in her mouth out even though we were smacking her back so hard I thought for sure we were breaking ribs. Thankfully, while I was on the phone, she swallowed whatever it was and started breathing again. The fire department still came and gave her the thumbs up. But seriously; Brian’s death, Aurelia’s big scare, and now Wendy. I just can’t take this anymore. I have no more nerves left. I thought there would be a point where the tears have stopped flowing because there were none left, but I’ve cried what seems like buckets and they are still flowing.

Wendy’s death isn’t hitting me hard just because she is my friend. Wendy and I were diagnosed with cancer around the same time. Tonight I re-read the e-mail she sent me on January 20th, a couple weeks after I was diagnosed with Hodgkin’s. She told me she was having troubles breathing and that she had a lump on her lung and wondered what she should do about it. I told her to go see a doctor and insist on them doing a biopsy. Next thing I know, she has her lung removed and then less than three months after that, she’s gone. In the end, Wendy’s brain tumors got too big and started causing her to have strokes. She was supposed to start Radiation tomorrow to reduce the size of them, but she ended up in the hospital again just a few days after I saw her last week. Last night, she suffered a brain hemorrhage, was put on life support, and was taken off this morning. Even though I knew Wendy’s diagnosis was not good, I thought she’d have at least a year, not a few days. I wanted to be there to fight it with her and extend her life as long as she could fight it. I wanted to be able to hold her hand again, laugh at our mismatched friendship, and most importantly help her in any way that I could. She was not supposed to be the Hillary in this friendship, neither of were supposed to be. She lost this battle just as I was getting ready to celebrate my victory. It really takes the wind out of my sails leaving it difficult to even want to celebrate.

When Wendy was here on Tuesday, I could tell that she was very afraid to die. She was very sad at the thought of leaving her children who meant the world to her. In a way I find comfort in the fact that she will not spend the next year worrying about leaving them behind, but I also feel for Austin and Kassi who were shortened time with their beautiful mother. I know she was in an incredible amount of pain, but I hope in her final moments, she did not know that she was dying.

The picture at the top is my favorite picture of the two of us. We're in seventh grade and Wendy was being her regular silly self. I was laughing so hard the smile on my face is about to burst. This is how I will remember my friend, always making me smile.

Goodbye Ydnew. I guess you got your way, you got to keep your hair. Although, I must say I was looking forward to you sporting a Harley Davidson Skull cap. Love, Secnarf.

I feel as though just as things were starting to improve in my life, I was just knocked back down. When will this end?

Power of Two

Cristina and Bryan had a beautiful wedding, surrounded by giant trees, lavender, a few hundred brightly colored Chinese lanterns, beautiful local flowers, family, and friends. One couldn’t have asked for a more beautiful day as they exchanged their vows under an arch of lavender. I stood in place with the other bridesmaids and watched Lena prance down the aisle gracefully scattering flower petals with flourish, dramatically tossing her hands up in the air to make sure the petals were properly distributed. When she reached the end of the aisle, she tipped her basket upside down and shook it to make sure every last petal was out and in its place on the ground. I couldn’t help but laugh and cry at the same time.

Like most weddings, there was a lot to be done before the big day. I told Cristina I would put the flowers together, do the bridesmaids hair, and be the stand in wedding coordinator telling people what to do so she wouldn’t have to. I spent most the day on Friday assembling bouquets, boutonnières, and table arrangements. I had beautiful flowers to work with and I also used greenery and lavender from Cristina and Bryan’s property. It was a lot of work, but quite soothing at the same time to make something beautiful for a beautiful dear friend. It was Cristina who came to Seattle with me when I was getting my biopsy surgery back in January. It was Cristina who was with me when my oncologist told me I had cancer. It was Cristina who watched Aurelia that night because I was admitted to the hospital because I was too sick from the gas induction to go home. It’s Cristina who I e-mailed and texted several times a day the last six months using her wedding as a distraction from my cancer.

While I was in Oregon, I also had the chance to see Wendy who was freshly out of the hospital. Our visit was short because we knew we’d see each other in a few days when she came up to see her oncologist in Seattle. The Seattle visit was emotional and hard. Wendy got really bad news about her cancer while in Seattle. She kept saying it’s now all about the quality of her life verses the quantity. What do you say to that? I wanted to hug her and say, “It’s going to be okay.” But the truth of the matter is, the end result is not okay and I’m not going to lie to her. What can one say in a situation where you know one of your best friends is now looking at quality of life verses quantity? I chose to tell her that I love her and that she needs to stay strong and not give up and to fight it as long as she can. My mom and I also fed her lumpia and hot and sour soup, some of her favorite foods. It was good to see her eat a lot because she looks as though she’s wasting away.

Even though I put on a brave face for Wendy, her visit left me very depressed. She has an eleven year old girl and a thirteen year old boy. This is sadder than Terms of Endearment and Beaches combined, because this is my friend and I am feeling utterly helpless. I was really fretting going to sleep last night when all of a sudden I got a text from Penny who wanted to see how I was doing. After some texts, we realized she was staying in a hotel a mere ten minutes from me, six if I drove fast, which I did. It was awesome seeing her. We talked about Wendy, about our own lives, and about our cruise we’re taking in February. It was a short visit as she had to get up to fly to Buffalo in the morning and I had to get up early to have my port removed, but it was an awesome visit.

Yes, my port is history! As always, it wasn’t a straightforward procedure with me and I was thinking the whole time I wish Dr. Miller in Juneau was doing it. For one, the surgeon who was supposed to do it left me in the hands of his resident. And get this, he didn’t even do it, his intern did the procedure. The resident had to talk his intern through the whole procedure and I heard things like, “Okay, cut more. No, no, that’s too far. Okay, a little to the left, oh, too far, oh wait, no, more.” And, my personal favorite which I heard about ten times, “No! Don’t touch that, it’s not sterile!” They had a really difficult time removing it because they said it was about an inch and a half deeper than they usually are. I heard the resident say, “It’s like digging in a deep, bloody, hole.” Not really the image I wanted. I am afraid to see what my already wicked scar is going to look like now that they’ve butchered me once again. But, it’s out. It’s painful because I have a huge incision in me, but like I said, it’s out! One step closer to being finished.

Oh, and before I forget, I’m having a picnic/BBQ in Seattle on Sunday, July 18th. All Washington and Oregon residents welcome (well, I mean those that I know!) Not sure which park I’m having it at, but I should know in a few days. Stay tuned.

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.

Only A Dream

I’ve been having a hard time sleeping lately. I don’t have insomnia like I had before, but instead; I’m having restless nights of sleep. I’ve been having the most stressful dreams.

The first dream I had took place at my friend Cristina’s wedding. Instead of getting married on her lavender farm (which is what she’s actually doing) she decided to get married on a river boat sailing the Rogue River. I had the girls with me and I was also a bridesmaid, so I was juggling a few balls. On top of it, I got incredibly drunk, lost the girls, and somehow my cat Chillcat got on board and peed on Cristina’s wedding dress. You’re laughing now, but I can assure it, it wasn’t funny while it was happening.

The next night I dreamed that my friend Penny and I were on our cruise. (I haven’t talked about that yet, but I will below.) Anyway, we were boarding the ship and our families came to wish us bon voyage and the next thing we know, our husbands left and ditched us with the kids (in real life- we’re going sans kiddos.) The next thing I know, I’m off to find our cabin and when I open the door, I am thrilled to see it is much larger than the inside, lowest level, no window, economy cabin we actually booked. Instead, it is huge, has a balcony, and even a wet bar. The only problem is; it doubles as the ship’s Gap clothing store so people are continually going through our room to buy clothes.

Both these dreams rival the Brendan Fraser dream I had about a year ago where I was once again drunk and dressed like an orca whale, flying on an Alaskan Airlines flight having to pose as a stewardess so I could get home. Seeing as it was my first time meeting Brendan Fraser, he was not impressed by the fact that I was drunk, nor that my orca tail kept hitting him as I walked down the aisle serving people.

Sigh…

So, needless to say, these dreams have left me exhausted.

About this cruise. It all started when I thought it would be great for Penny and me to fly down south when this whole thing is over and see the Indigo Girls live in concert. Unfortunately, they have nothing booked on the west coast over the course of the next year, but they were doing this thing called “Cayamo” in February of 2011. It is a cruise on a cruise ship in the Caribbean with loads of musicians, including the Indigo Girls. It’s not your normal cruise, musicians such as Patty Griffin, Steve Earl, John Prine and numerous others are going to be on it, and every night, you get to see them in concert while during the day, they’re out mingling with the cruisers. I told Penny about it and she said we had to do it. After much hemming and hawing (mostly wishing and consulting with Addison,) I decided that one of the things having cancer has taught me, it’s to enjoy my life, enjoy my family, and enjoy my friends. Penny was my travel partner for two months as we backpacked around Europe in 1999 so we’re well attuned to each other’s traveling traits. I’m the plan-ahead mother hen and she’s the free spirited wild card, its how our friendship works and it works great while traveling. Since high school, she’s always been the one to get us on the edge of trouble, and I’m the one to get us out of it. It keeps things fun and interesting and I can’t wait to see what happens on our cruise. Taking a vacation like this with Penny is normally something I would only wish and dream about, so it’s really exciting to see this wish come true. And it doesn’t stop there. I am happy to say that Addison and the girls and I are planning a trip to Hawaii in March! I can’t wait to see the girls play in the sand while Addison surfs the waves. They’ve been through just as much as me the past few months, and they deserve some fun in the sun too. It seems a bit insane to take two frivolous vacations less than two months apart, but we’d been saving for a Hawaiian vacation for a few years, so I’m stoked we’re finally doing it!

Speaking of dreams and wishes, I told Addison that I know my cancer was never at the point of life threatening, and I know I’m not a young child, but it still would have been cool to be granted a wish through The Make A Wish Foundation. What would that wish be? My wish would be to be a guest judge on Iron Chef America- as long as their secret ingredient wasn’t sardines.

I'd Rather Press On

I’m still living off the high of being cancer free because each day, I run into someone who doesn’t know and I get to share the good news. The most recent trip was to Valley Medical. I’ve come to know lots of the nurses and the receptionist; they all know me by name and always ask how I’m doing. On Wednesday and Thursday I kept seeing them in the medical center and sharing my good news. They all were elated and said things like, “that just made the rest of my day!” One of the receptionist who I have a great fondness for actually came out from behind the counter and gave me a huge hug with tears in her eyes (she’s a young mom too and we used to attend the same camp in Haines as kids.)

I never get sick of sharing the good news. However, that doesn’t mean I’m not getting sick. Each chemo treatment is hitting me harder and harder.
Have you ever gotten sick and then you can’t stand the taste or smell of the last thing you ate? For me it’s Cambell’s chicken noodle soup and roast beef sandwiches on white bread. In 7th grade, that was the last thing I ate before coming down with a terrible stomach bug that had me puking for days. I also can’t go near Tequila anymore thanks to an entire pint glass and my friend Dave Rubin. (I shouldn’t blame Dave, he handed me the cup for a “sip” and I drank the entire pint. C’est la vie.)

The same now goes for chemo. Brynn was saying the other day that every time she gets near Swedish hospital, her stomach turns. I completely agree with her. For me it’s not only driving by Bartlett or Virginia Mason, it’s also the clothes I put on. Every other Friday, I put on the same camisole. I call it my chemo camisole because it’s easy for the nurse to access the port when I wear it. My stomach turns when I look at it. I think I’m going to burn it after my last treatment.

There are a few other things that set me off too. The rubbing alcohol that is used to sterilize my skin before accessing my port is nasty. I actually have gag reflexes at the smell. I hold a candle up to my nose and try to smell the candle instead, but the rubbing alcohol is so potent, it permeates my nostrils and makes me want to run for the bathroom. The other thing that is truly disgusting is saline solution. They use it to flush my port to make sure it’s clear and getting proper blood flow. But get this; I can taste it in my mouth when they flush it! It is the most disgusting taste and smell ever. It’s very odd to think that there are veins in my chest that carry the taste up to my mouth, a taste even Jolly Ranchers can’t mask.

My mom flew in Thursday night to get me through this next treatment. She’s going to bounce back and forth between here and Ketchikan this month. I’ve been really lucky to have her and previously Addi’s mom around. I know Lena has especially enjoyed having grandma time. My mom came loaded with fresh lingcod that my dad just caught and frozen lumpia that she made. I’m going to have to wait until after this weekend to eat these items as I don’t want my favorite foods to become one of the off limits list later.

I was told with each chemo treatment it gets harder, and boy is that true. The day of chemo is proving to be the hardest. I came home at 2 PM and didn’t move from my bed until 3:40 AM. For the past two nights, Lena has been concerned about me and has snuggled in a bit after dinnertime and has slept all night with me. I wouldn’t be surprised if Lena announced one day she’s going to be a tu-tu wielding doctor, nurse or veterinarian. She toted her vet’s kit to the veterinarian office the other day and impressed Dr. New as she assisted in giving Yasha her exam.

I found out great news the other day. Remember my friend Brock who is running the Team In Training marathon to raise money for The Leukemia & Lymphoma Society of Canada? He is running the race to honor his friends and family who have had or are currently battling Leukemia/Lymphoma, and I’m one of the ones he’s honoring! Originally, he was going to run the race in San Diego, but serendipitously changed his location to Seattle and it just happened to be the time I’m there getting my radiation! I am going to be able to be there to cheer him on and I couldn’t be more excited. He’s very close to his fundraising goal, so if you want to pitch in to make it happen, visit this link: http://my.e2rm.com/personalPage.aspx?registrationID=813208. I can’t wait to stand behind that finish line and see Brock cross! Brock is also the person who is going to run my first marathon with me in August of 2011. It will be a great moment.

I have two more chemo treatments left, thank goodness! I really see why people quit and just say enough is enough. Because I'm really starting to hate chemo. But in the beginning, I said I wouldn't give up and I'd do whatever I had to do to get better. So I will keep doing this. I want to make a shirt that says, “Chemo Grad May 2010” to wear to my last chemo appointment on the 28th. I can’t wait for chemo to be behind me. Can’t friggin’ wait!

Reasons Why

Three more chemotherapy treatments, six more shots, twenty more days of feel nauseas, six more days of post chemo sore throats, nine more days of post chemo migraines, one more month of numb finger tips, approximately fifteen days of not being able to taste anything and feeling like my tongue has died, and twenty radiation treatments….the countdown is on and it’s really all I can think about it.

Many people have been asking me if the cancer is gone why I have to still undergo three more treatments of chemo and the four weeks of radiation therapy. The answer is simple, it’s insurance. Typically Hodgkin’s patients can just be treated with chemotherapy, but when their tumors are considered bulky and over 10 cm, radiation is always required. My biggest tumor was 9.6 cm and after the tumor board met (yes, there’s a tumor board) they decided to have me do the radiation. When my doctor originally told me about having to do radiation, he said the reason why they want me to do it is because I’m a young mom with two little girls and they want me to live. Okay, so who can really argue with that?
I know there are risks involved with radiation, most notably developing other cancers like lung and breast cancer. Supposedly I am out of the high risk category for developing breast cancer because that typically shows up in women who had radiation when they were teenagers. The other big risk is heart disease because the radiation can affect the ventricles leading to the heart.

Yes, there’s risk involved. But I will be less upset if I develop one of these diseases than I will be if my Hodgkin’s comes back because I didn’t finish the recommended treatment. I’m looking at it like antibiotics. You may feel better, but it’s the rule that you need to finish all the pills for it to work.

Thanks to the generosity of my friend Nicholle, I have been offered a condo in the Seattle area for the entire time I’m getting radiation. The girls are going to come with me and my mom, Addison and possibly some other friends/family will take turns helping me. Supposedly my symptoms during radiation will be tiredness and a sore throat. I can live with that seeing all the other stuff I’ve been dealing with.

Closer to Fine

I cried three times on Thursday. They were all tears of joy and relief.

The first time I cried was while waiting for my MUga test. I got an e-mail from my sister who told me that my nephew Mitch is back from Iraq safe and sound and back on U.S. soil. I was so happy to hear the news, my fears of the tests I had lined up for the day seemed to dissipate. Tears welled up in my eyes as I felt the relief that my baby nephew is home safe. Now I just have to worry about him getting hit by a car while he's riding a skateboard.

I had my MUga test and then a PET scan. About an hour after my PET scan I met with my radiologist, Dr. Yao. She is young and very zippy with a lot of compassion and appears to have a lot of knowledge. She said she knew I was probably eagerly awaiting to see the results of my PET scan, so that’s the first thing we would cover. First she pulled up my scan from January. It showed my neck and chest with 10-15 bulging black blobs that used to be my lymph nodes.  It also showed my engorged breasts, filled with breast milk that would no longer be able to give my then three month old.  I remember pumping it out that night and pouring it down the drain because it was filled with radiation and chemo drugs. 


Next, Dr. Yao showed me the scan from that morning and voilà, the black bulges were gone- ALL GONE! She then said the words I will always remember, “Complete Response, no more cancer.” I let out the longest sigh ever, like I had been holding my breath for four months-- and then came the tears. I told Dr. Yao, “I’m just so happy, so happy.”


















After I left Dr. Yao’s office, I called my mom and dad, my brother, my sister, and many friends. Everyone I talked to had the same response, a big sigh of relief followed by tears.

I had an early dinner with Anne and Jeremy and then headed back to my hotel. I had a beautiful hotel room with filtered views of Puget Sound and Lake Union. The sun was starting to set and I sat on the window seat just looking out at all the beauty, that’s when the final tears of the day came. They were not like any tears I’d ever experienced. Not tears that come from a broken heart, or tears of sadness when someone has died, nor tears of grief. They were tears of pure and utter relief and happiness that this is all going to be behind me very soon. The tears were a backlog of tears that I had been holding back for six months since we brought Aurelia to the ER at 2 am in November, since dealing with my placenta accreta, and then my cancer. The black cloud of bad luck that has been following behind me closely had just been halted in its tracks. Like a stalker, it’s been there following closely behind me and I’ve just been trying to ignore it and charge ahead not letting it overtake me. But on Thursday, I turned around and screamed at it to GET LOST because I have won and I refuse to get overtaken by the storm. I won, I won. I WON.

After my crying fit I called more people to tell them the good news, including Dr. Fisher who initially discovered the lump on my neck and I who I credit for saving my life. Dr. Fisher was elated and also happened to be in Seattle and suggested we get together for dinner the next night to celebrate, but unfortunately I was leaving town too early for dinner. There will be plenty of time in the future to celebrate!

On Friday I got round 4A of chemo. My oncologist decided that he would knock one cycle of chemo off my treatment plan and he also knocked off the drug Bleomycin because he felt it may be doing damage to my lungs. Dr. Malpass and Dr. Yao decided on 4 weeks of radiation starting two weeks after my last round of chemo on May 28. Only three more rounds of chemotherapy sounds pretty good to me!

My excitement didn’t end there. Dr. Yao asked me what I was going to do for the next seven hours before my flight left. I joked that I’d probably just wander around downtown high on chemo drugs. She laughed, thinking I was kidding (I wasn't) and then said I should take an earlier flight at which point she went to the AK Air website and found an earlier flight for me. I opted to have a four hour layover in Ketchikan instead. It was so wonderful to see my parents, Perry, Becca and niece Lexie. My friend Penny even swung by and we all went out to dinner at my favorite place in Ketchikan- Diaz Café where they just happened to have my favorite dish as the special. My fortune in my cookie read: “Your luck is about to change.’ I think it is, I think it really is.

Spring

It’s been a long time since I’ve written. I’ve been busy with the girls and doing a bit of work here and there. I guess I’ll just start with an update.

First things first…I had the most wonderful Easter. The best part is, not only did I feel good, I remember every detail about it. I hid eggs and baskets, I made Eggs Benedict, I got the girls in cute Easter outfits and off to church, Jan made a wonderful Easter dinner, and I was able to eat it. Lena opened her birthday presents and I remembered to take pictures. I even bumped eggs with Lena. I feel very lucky that I was able to enjoy my Easter.

On Wednesday I leave to go to Seattle for tests, tests and more tests.
Here is my schedule:

Wednesday:
11:30 PM- arrive into Seattle

Thursday:
7 am- PET Scan. This two hour test will show if the cancer has left my body and show that the chemotherapy is working.

11 am- Pulmonary function test to make sure my lungs are still working. One of the chemo drugs I’m on is very harmful to lungs, so this test will make sure the drug is not damaging them.

12:00- Wig. Yes, I have an appointment to get a wig, though I can't promise I'll wear it.

1:00- MUGA test. This is a MUltiple Gated Acquisition scan which will make sure my heart is not being negatively affected by the chemo.

2:30- Radiation consultation. At this meeting, I will meet with the radiation doctor who will go over my radiation treatment plan with me.

Friday:
8 am- Chemo and appointment with my oncologist.

6:00 pm-Fly back to Juneau.

It’s going to be a whirlwind trip and I’m nervous about some of the tests, most especially the PET Scan. I want to feel confident that everything is going to come back good and that they say, “Congratulations, you are now cancer free!” But, I admit to harboring fear and apprehension. With that said, I do feel better and a lot of my symptoms are gone. My rashes have dissipated, I am not utterly exhausted all the time, I no longer have night sweats, my joints are not aching, and I’m not having unexplained dizzy spells. To me, this says the drugs are working. I just hope the tests say the same thing.

This afternoon Lena and I worked in my garden beds ripping out last year’s dead foliage. I never got around to it last fall because I was too pregnant to bend over and scale our rock walls.

Today Lena strolled around in a pink frilly dress and X-tra Tuff boots helping me pull up the dead leaves and stems. I kept showing her the new sprouts and telling her to be careful not to pull them up as well. She was quite curious about the whole process and why we threw away the dead leaves but left the new ones. I found myself explaining to her that the green sprout leaves were new life and wilted brown leaves were dead.

It was very therapeutic for me ripping out the dead stems and exposing the fresh new buds of spring. It gave me hope of brighter things to come like the tulips and rhubarb that will bud in June, and the lilies and iris’ that blossom in July. Come the end of June, I will be done with chemo and by the end of July; I will be done with radiation and hopefully done with cancer forever. When I think of the things yet to come like 6 more chemo treatments and radiation therapy in Seattle away from my family; June and July seem very far away and nearly unreachable. But when I can already see the sprouts of my tulips, rhubarb, lilies and iris’ forcing their way through the hard dirt and spots of snow, June and July seem a lot closer.

Nothing More's Gonna Get In My Way

Easter is my favorite holiday, it always has been. Most people like Christmas or Thanksgiving, maybe even Halloween because they get to dress up, but I like Easter.

The reason I love Easter is because of all the wonderful memories I have of Easter when I was a child. It all starts with dying Easter eggs the night before. As a kid (and even as an adult at home) we’d all gather around the kitchen table and dye eggs with food coloring. We’d nag my dad to come to the table and partake until he’d eventually come and plop an egg in each color only to then walk away saying that’s all he was going to do, leaving all the colors unusable due to his eggs hogging the cups. Laughing, there was always laughing while dying eggs.

In the morning I’d awake to a jelly bean trail starting at my bedroom door that would lead me to the living room where the hunt for eggs and my basket was on. After finding eggs hidden in plants, under the piano peddles and under the couch, it was time to eat my mother’s Eggs Benedict and Cherry-Go-Round sweet bread for breakfast. When I was really little we’d go the church for a pancake and ham breakfast put on by the youth group. The thing I remember most about the meal is that it was one of the few times the church used their church china and silver tea set, and I remember that being very special. After breakfast, it was time for church. I always remember wearing a brand new dress that my mother had made for me and I’d usually have a new stuffed rabbit that was tucked inside my Easter basket.

After church we’d go to the Cusack’s Easter Egg Hunt where they lived at the New England Fish Company. They had a sprawling grass yard where they hid real eggs and plastic eggs. The kids would run around looking for the “big money” egg while the parents stayed indoors and ate, chatted and drank Penny Cusack’s orange blossom drinks. Fun was always had by all. (An orange blossom is vodka mixed with orange sherbet—oh yum!)

We’d then come home and mom would start making dinner and thus would commence the “egg bumping” competition. Egg bumping is a family tradition brought from my mother’s side of the family that no one has heard of except my family and people think we’re crazy for it. When I took a Russian Christianity History class in college I read that egg bumping was a Slavic Pagan tradition, which makes sense because my mom’s family all hails from Poland/Ukraine. When it comes time to crack the eggs to make deviled eggs or other edibles, we each take one of the eggs we painted and partner up and bump eggs. The one whose egg doesn’t crack is declared the winner. Usually there is one egg that has miraculously survived being cracked up against everyone else’s eggs with great force. One year we couldn’t understand how Perry’s egg could survive everything (even when it was beat up against the counter) until we learned Perry put glue on one end for reinforcement. You gotta watch my brother.

I admit to being kind of a nut when it comes to Easter. I decorate the house, force my family to dye Easter eggs, I make Eggs Benedict and Cherry-Go-Round for breakfast, I hide everyone’s Easter baskets and the eggs, I make a huge and complex Easter dinner and I love every minute of it. However, not much of this will happen this Easter because as I write this, chemo is being pumped into me. I won’t have the energy to do much of anything on Easter let alone even remember it. However, I am going to try. Tonight before I get too loopy, I hope to dye eggs with Lena. Earlier this week I bought everything for Easter baskets and they are all separated in bags so all I have to do is dump them into the baskets and hide them. I am going to set my alarm for 5 AM Sunday morning and hope to hide the baskets and eggs before Lena wakes up at the crack of dawn. I’m going to have to let a few things slide like the Eggs Benedict and cooking an elaborate meal. Maybe I’ll feel like bumping a few eggs, maybe not. I’ll try to make it to church, but I’m not promising anything. Addison told me the last Sunday I was recovering from chemo I didn’t come out of the bedroom all day. The funny thing is, I don’t even remember. Oh, and to top things off, it’s Lena’s birthday on Sunday. We’ve already celebrated with parties, but it still bums me out that on her actual birthday, I’ll be under the influence of chemicals and drugs. The good thing is Lena is forgiving and understanding. I am so lucky in that way.

Many people wonder why I’d even bother waking up at 5 am to hide eggs when Lena wouldn’t even notice if I didn’t. I do it so that I can keep some normalcy, it makes me feel good. I recognize I need to slow down, but at the same time I still want to live my life. I don’t want to be treated like I'm fragile; I don’t want to have people do everything for me. I want to cook meals when I can because I enjoy it. I want to drive Lena to school and wake up in the middle of the night to feed Aurelia. I want to continue working. I want to host parties. I want to go dancing! I want to wake up at 5 am to hide Easter eggs for my three year old so I can hear her giggle as she totes her baskets around discovering eggs that the Easter Bunny hid for her. I know my limitations and ask for help when I need it, and I appreciate the help I receive. But, I still need to find enjoyment in the doing of things. It’s in my nature and I can’t help it. This is why I’ll get up at 5 am, put on bunny ears, and hide eggs with a giant smile on my face. Then I’ll go back to bed until Lena wakes me up.