The Last Saskatchewan Pirate

On Saturday, we celebrated Lena’s third birthday. Her birthday isn’t until April 4, but knowing I am scheduled to have chemo two days before her birthday, we opted to do it this weekend. We had a small party with a few of her friends and their parents- toddlers don’t do parties solo yet! The kids ate ice cream and cake while the dad’s ran outside and hid Easter eggs in the grass. The kids put on their raincoats and boots and scampered through our soggy yard unphased by the cold and damp weather. They carried their Easter baskets and happily tromped across dead raspberry bushes and bright red heads of rhubarb peeking its way through the dirt. I think they might have killed our garlic and possibly the tulips that were just beginning to sprout, but that’s okay because they had fun. After they loaded their baskets with brightly covered plastic eggs, they came inside and unloaded their loot. One kid exclaimed it was just like Halloween stuffed into eggs. Lena had a marvelous time and asked me if we could do it again tomorrow.

Before the kids arrived, I had wished I had kept my hair one more week. I was worried that they’d ask questions and point out that Lena’s mom had no hair. Amazingly, not a single one said anything. Maybe they were too busy to even notice, maybe to a toddler, women without hair are just like men without hair. To see the world through the eyes of a toddler would be a wonderful thing. They observe differences in nearly everything--except people. I love that.

I wasn’t so lucky today while grocery shopping. I’ve been wearing a scarf lately instead of a hat and today I made the mistake of putting on hoop earrings. While wandering the frozen vegetable aisle, a kid about 8 years old grabbed me and yelled, “Look mom, a Pirate!” I wriggled free from his grips because honestly it freaked me out that he felt the need to grab me, and then I laughed and hurried along my way. However, I kept crossing paths with them in the store and each time, he would point at me and yell out “pirate!” I was torn between finding it humorous and annoying at the same time. I chose to find humor in it and on the drive home considered finding a fake parrot to mount on my shoulder for future outings.

Fast As I Can

Thanks to Arlo, my head shave is documented in video. I feel so hi-tech. All I can say is Arlo and Oksana sure move fast.

What Went Wrong (In Your Head)

Actually, nothing went wrong, it all went right. I may have jumped the gun a bit, but I did it, I shaved my head. I didn’t shave it myself; my friend Arlo actually did the deed of making me bald.

My hair had just been coming out so much that I couldn't keep up with it. It was getting depressing finding it everywhere from my pillow to my bathroom sink and I just thought I had nothing to lose- except it. There's so little I have control of with the cancer, I thought I might as well just take charge and do it. I probably could have had hair for another month, but alas, I jumped the gun.

When it came time to shave it, I called Arlo and asked if he would do the honors. A pro at shaving his own head, he kindly obliged. I also knew his wife Oksana would be able to make a stellar Mohawk, something I wanted to do for my nephew Mitchell who has always been infatuated with Mohawks. Mitch is in Iraq right now, but has already seen photos and said “You rocked the hell out of that Mohawk; it put both of mine to shame.” I’m here to please Mitch, here to please. The funny thing is that now that my head is shaved, I look a lot like Mitch. Even my niece Lexie said I look like Cousin Mitch.

When I told Lena I was going to cut all my hair off she looked at me and said, “Just like Arlo and Scott.” (Our two friends with shaved heads.) She seemed reasonably unaffected by the suggestion and when she pulled my hat off my head this morning, all she could do was giggle. Aurelia thinks it’s funny too. I guess I do too.

It was a fun evening spent with good friends who helped me make light of the situation. I can’t say it was tear-free because as Arlo shaved the final spot, I did get a little teary eyed. But, I was laughing soon after as Arlo and I compared our bald heads for the camera.

Enjoy the show…

On other news, Cristina is going to see the Indigo Girls tonight, live! They are performing at the LaSalle Stewart Center at Oregon State University, a stage I have performed on! I can now say I’ve sung on the same stage as the Indigo Girls. But that’s not the most exciting part; Cristina’s going to call me while they’re playing so I can listen in. Whohoo!!

Hope Alone

Today I brought the Indigo Girls with me to do my chemotherapy. They were the perfect companions; they always know what to say and how to say it. Old friends since Jr. High, they’ve been with me through good times and bad over the past 20 years.

Right after my first chemo session in Seattle, I went and got 10 inches cut off my hair. The hairdresser asked me if I wanted to listen to music and said to give her a band I liked. It didn’t take any time at all for me to say, “Indigo Girls.” She typed their name into Pandora and as she was getting ready to make the first cut, the first song to come on was the Indigo Girl song called, “Secure Yourself.” As all my hair fell to the floor the words, "secure yourself to heaven, hold on tight, the night has come. Fasten up your earthy burdens, you have just begun.” drifted through the air. It was one of those near omen moments where I couldn’t laugh off the fact that I had cancer.

I hate to admit their music had been absent from my life the past few years. I hadn’t bought one of their albums since 2004 and just recently they came into my head and told my friend Cristina that I didn’t have any of their new stuff, so she quickly sent me some in the mail. It’s been so long since I’ve had new music. It brought me right back to high school. When I was fishing with my parents I would buy new CDs on a near weekly basis. I’d retreat to the fo’c’sle of the boat with a new CD and frantically rip the cellophane packaging off and then carefully lift the shiny new CD from its jewel case and place it in my Discman. I’d then remove the sleeve and unfold the crisp glossy paper, smelling its newness. I’d hit play on the CD and read each lyric, savoring the music and lyrics. I would listen to that CD over and over the whole 7 hours to the fishing grounds. When Cristina sent me the new CD, it rushed me right back to sitting on my bunk in the fo’c’sle. It made me feel great, made me feel young, made me feel healthy.

I’ve been having anxiety about the looming date of April 16th when I have a PET scan to find out if my cancer is shrinking and the chemo is working. I feel better and a lot of my previous symptoms are diminishing, but there’s always the “what if?” Tamara told me today she’s only lost one patient out of ten who had Hodgkin’s. It was a young man, same age as me with three kids. The treatment just didn’t work for him and couldn’t save him.

I’ve also been upset about the fact that I’m not able to be present in things that are going on around me or be there for people who need me. I’ve noticed my friends and family gingerly sharing their tribulations with me (or not sharing them with me at all) as to not involve me or worry me. It bugs me because I’m may be not well, but I’m still here. And here I sit, dissolving my worries away by listening to the songs of the Indigo Girls.

I have two friends that share my love for the Indigo Girls, Cristina and Penny. Penny and I used to walk from our neighborhood of 2nd and 3rd avenue to downtown Ketchikan and back, about an hour long walk. We’d sing Indigo Girls songs the entire walk, often both launching into the harmony leaving the melody behind without anyone singing it, which inevitably sparked humorous arguments over who was going high and who was going low. Our favorite song is Watershed, a song about waking up and finding your best laid plans didn’t work out and now being faced with difficult choices on starting over. I miss those days and wish I could walk arm and arm up and down the streets of K-town with Penny Lane, without any cares in the world. I’d even let her sing all the harmonies.

Cristina and I met in college and instantly shared our fondness of the Indigo Girls. Our favorite song is Power Two, mostly because the first verse “Now the parking lot is empty, everyone’s gone somewhere.” My freshman year of college, Cristina and I had a similar moment on Easter weekend when we woke up to an empty Oregon State campus because all the other students went home for Easter. Being from SE Alaska Cristina and I were stuck with just each other, so we put on bunny ears and Groucho Marx glasses (our trademark) and drove to the coast and hit the Tillamook cheese factory, now tradition when we find ourselves together in Oregon. Even in my 30s, I’d be willing to don rabbit ears and Grouch Marx glasses to go sample cheese curds with a good friend.

So here I sit, listening to the Girls and thinking of my two friends far away. I’ve got my ear phones in my ears (now the music comes from my iPhone instead of a Discman) and I’m also wearing a tiara because I was nominated Valentine Queen by my sorority sisters. It’s like Penny, Cristina, Amy and Emily are all here with me cramped behind the infusion curtain. They are the best company I could ask for and they’re not even here.

My new favorite song by the Girls is Fleet of Hope. I think it’s going to be by cancer mantra song.
The chorus goes:
‘Cause the fleet of hope is so pretty when she’s shining in the port.
And the harbor clings to the jetty for protection and support.
Out in the choppier waters the sharks swim and play
You’re all washed up when Poseidon has his day.

(I like to think of Poseidon kicking the cancer cell’s ass.)

Hope. It’s all about hope now. Hope for a cure for cancer for those who are struggling more than me, hope that my tumors are shrinking and the cancer is leaving my body, hope for happier futures, hope for healing, hope for love and acceptance, hope to have a partner in crime (or bunny ears) when parking lots are empty. Hope, and hope alone.

Where is My Mind

I have round 3A of chemo tomorrow (in layman’s terms, that’s my 5th treatment- 8 more to go!) The first few I galloped into them unaware and unafraid of what was to come. But as I become more of a veteran of chemo, I get more and more apprehensive to run head first into battle. I know it’s something I have to do, but the anxiety starts to rise and I want to turn around and run the opposite direction. I’m seeing more and more of the side effects that come with the treatment. My hair is falling out rapidly. I can’t keep up with the hair floating around our bathroom; it looks like Cousin It has taken up residency. My finger tips are completely numb and that’s a symptom that may last beyond chemo, hopefully not. There's the constant hunger because of the steroids resulting in me gaining 12 pounds since January. None of my clothes fit me anymore and someone asked me if I was pregnant. Then there is there’s the week I’m completely absent from the world.

One of my goals for getting through cancer is that it doesn’t have much of an effect on Lena and Aurelia, especially Lena. I don’t want Lena to remember this part of her childhood as the time when mommy laid around on the couch and couldn’t rough house with her because every time she knocked into mommy’s port-a-cath, mommy winced in pain. I don’t want her to remember that 4 days out of the week; mommy was too knocked out of her gourd on medication to drive to her to school.

So far, Lena doesn’t understand the illness and I’m fine with that. When we say “mommy’s not feeling well,” she looks me over and tells me I look fine to her. She holds my hand and rubs my temple when Addison gives me my shots and says, “You’re doing good mommy. This won’t hurt a bit.” So far, she seems reasonably unaffected and I’m hoping it stays that way, I’m hoping she just doesn’t remember.

But what about me? What will I remember about this time? I woke up the other morning and found my once chubby legged toddler was wearing nothing but underwear and pink ballet flats with glitter. Her new long and lean legs bounced around the house as she sang Do-Re-Me in perfect pitch. Aurelia went from size 2 month clothes to 6-9 months overnight. I don’t remember her even being in 4 month clothing. How is this possible? My children are growing up and I’m missing it.

I’m trying to remember to take lots of pictures, but half the time I can’t remember where I placed the camera (or where Lena absconded with it.) But even if I take pictures, I feel they won’t do justice. I feel as though I’m missing so much. I once heard the phrase, “I’m just sitting around watching my baby grow before my eyes.” It’s so true when they are this young.

They call it chemo brain and I don’t like it. I feel lucky it’s just every other week, but that’s every other week that I’m not present in my kiddo’s lives. Sigh. I was going to end this by saying there’s no way to end this on a positive note, but what am I thinking? Yes, there is. At least I know I’ll be here for them in the future. There may be six months that mommy’s not quite all there, but at least I’ll be there for their future.

PS- Wendy is doing great! The doctor was able to remove the entire tumor, which of course resulted in the removal of her entire left lung. The good news is the doctor thinks its sarcoma and not melanoma. This is good news as far as cancers go. Wendy is healing remarkable and giving the doctors and nurses hell, which means Wendy is back in business.

Wisheries

“Cancer is the new wedding card for our generation,” Jeremy said last week while I was in Seattle visiting with him and Anne. Anne practically snorted her water out of her nose at his comment. I agreed 100% with Jeremy. First it’s the save the date, then it’s the wedding invitation, then it’s the baby announcement, then it’s the we’ve bought a house and don’t forget to change our address, oh, and now comes, one of us has cancer. It just seems like so many people we know are being diagnosed.

The conversation arose when I told Anne that our friend Wendy was just diagnosed with cancer. From the first day we met in 7th grade, Wendy and I competed at absolutely everything we did. Both tall brunettes who participated in theater and music, and who both who wanted the attention of our friends and those around us, we continually butted heads, but somehow always came out best of friends and supportive of each other. Our favorite movie as kids was Beaches. You know it, The Wind Beneath My Wings movie with Bette Midler and Barbara Hershey. Growing up, I always viewed Wendy as the Bette Midler character CC- loud, always saying what was on her mind, never PC, and oftentimes embarrassing me in public. I viewed myself as the more “refined” character Hillary that Barbara Hershey played. If you don’t know the story, Hillary ends up developing cancer and dying from it and CC comes in and raises Hillary’s daughter. Tear jerker movie.

When I told Wendy I had cancer, I have to say we both probably laughed a bit at the irony of the story. We also knew this cancer isn’t going to take my life, so we were light hearted about it. Wendy wrote me an e-mail and ended it with “you are the Wind Beneath My Wings Franny.”

A week later, Wendy e-mailed me and asked what she should do about a lump on her lung. My first reaction was bad. I thought, hold it, is she upstaging me once again? I have cancer, so now she has to get it too? Very bratty to think that I know, but I have to admit to being in utter shock that this could possibly be happening to her. I knew that a lump on her lung was not a good sign and quickly encouraged her to seek a second opinion from another doctor and to be hasty about it. Turns out, yes, she is upstaging me again and it’s quite serious. She was diagnosed with melanoma that has moved beyond the skin surface and has now taken over 1/3 of her lung. It has also moved into her lymph nodes near her lungs.

Surgeons are removing her lung today and hoping to get all the cancer out. She will not be eligible for traditional treatments due to the fact that her lung capacity will be diminished. I’m just hoping for a successful surgery and that they are able to get everything out. I’m not willing to think about the other possibilities at this point.

I am dumfounded that this is actually happening to us. What are the odds that two friends who were inseparable for nearly 6 years are both diagnosed with cancer within a few weeks of each other? I know we have two completely different types of cancer which are completely unrelated to each other, but before we knew Wendy’s diagnosis of melanoma, I was curious what we could have gotten into that would have caused this. I stand on the belief that my cancer is environmental. Before Wendy’s diagnoses, I couldn’t help but think it was the self tanning lotion we used to put on. I remember putting on about 10 applications one evening while watching Beaches and when my mom picked me up in the morning, I was so orange I looked like an Oompa Loompa. All I know is I don’t have the answers as to why this is happening and right now, I’m feeling frustrated.

I wish Wendy and her family did not have to go through this. I wish she could have the type of cancer I have. But, I mostly wish and hope that her surgery went well today and that they are able to get all the cancer out of her. I think a girl deserves a wish to come true, don't you?

Always Getting Better

I have so much to write tonight, so grab your coffee, tea, or whatever…
For starters, it’s a good thing I’m on anti-anxiety meds because right now I’d be flying through the roof. Today Aurelia had her 4 month shots. She was supposed to have 4 shots (although three combined in one, so technically 6.) I am already leery of immunizations for babies so I made the decision to have them broken up and we’d come back for the triple shot at a later date. Aurelia did as “okay” as a 4 month old does after getting three shots, but when we got home, let’s just say her mother did not.

There was a message from the nurse telling me to call her at the clinic. She inadvertently gave Aurelia a shot 9 days past expiration date so she’d have to come in and get it again. She said not to worry, that it probably is affective (causing no ill side effects of it being past due), but they have to be on the safe side and have her come in again so it “counts.” So this could potentially mean double dosing and it royally irks me. It doesn’t help matters that Aurelia ran a fever this evening and writhed in pain as she cried. It brought back scary memories of her illness at three weeks old we fumbled through the What to Expect book and struggled with taking her temperature. Addison held her and walked with her until she fell asleep, and so far, so good. We’ll see what tomorrow brings. Poor Lena was so stressed over it, that she woke up at 1 am telling me to take her temperature too. She was fine, but it’s engrained in all of us at this point to worry.

So here it is 2 in the morning and I can’t sleep. It’s situations like these that to me make me not worry about myself. But, since this blog is supposed to track this chapter in my life, I’ll talk about Seattle this week.

First, there were no Piroshkies. It wasn’t the sugar thing, it was the time thing. I simply ran out of time, which is fine. Maybe I’m not meant to get them until I’m all done, perhaps? And for the record, I’m doing pretty good on the anti-sugar kick. Although, Stephanie did e-mail me back and said I should be having some in my diet and not to cut it all out.

I flew into Seattle on Thursday allotting myself plenty of time to make it in case of flight delays. Addison’s Aunt Jeanne picked me up from the airport and we set off on an adventure to find linens for Lena and Aurelia’s room. No linens to be had, but it wasn’t from lack of shopping. I had a lovely dinner with Jeanne and Dave at an Italian restaurant that Dave’s been dining at since he was in the service. Afterwards, I went to stay with Anne and Jeremy, my home away from home in Seattle.

I spent practically all day Friday at Virginia Mason Hospital. I didn’t like being back there, but thankfully had the comfort of a good childhood friend Mariah who I haven’t seen in ages. We have always been friends through mutual friends, but after Friday, I think we forged a firmer friendship without the legs of others to support us. Mariah met me at a café near the hospital where we dined on Eggs Benedict and she gave me gifts of slippers and a shawl. We ventured over to VM and I introduced her to the fun of chemo. Poor Mariah puked halfway through treatment. She wasn’t sure if it was the ham from the Egg’s Bennie (a recent vegetarian gone carnivore) or if it was watching someone get poked and pumped full of chemicals. Thankfully, she recovered quickly and she made me laugh with her great smile and stories. She made me forget about why I was there in the first place.



My port hooked up. It looks like a little butterfly sitting on my chest. The next one is the nurse manually pushing the "Red Devil" treatment.

The point of the trip south was to see my oncologist, Dr. Malplass, and boy did I ask him questions. They ranged from insomnia to depression and he gave me a lot of insight. He was bummed I didn’t have Aurelia because he said he wanted to play with the baby, a true sign of a caring man.

Insomnia I’m going to have to deal with. I’m taking Tylenol PM as suggested previously by my Hodgkin’s pen-pal Eve in Georgia. Dr. Malpass said that was probably my best bet. Unfortunately, insomnia is a sign of the meds and there’s not much to be done. He did give me some advice though with the depression. He confirmed I was coming down from the meds, but also told me I was most likely going through menopause, another side effect of chemo. Don’t worry, it’s only temporary and I’ll get to go through it all again when it’s my natural time to go through it, yeah me. In the meantime, he’s extended some of my pills to help wean me off of them instead of the hard crash. Day one starts tomorrow, we’ll see how it goes.

As Dr. Malpass was leaving my room, he patted me on my knee and said to his intern, “This is why I’m in this business. This is the highlight of my day, seeing someone I know is going to be fine and is going to make it through this.” If that doesn’t give me a vote of confidence, I don’t know what would. My oncologist is a wonderful man.

After chemo, it was nearly 4:00 and Mariah and I met her boyfriend Caspian, also an old friend of mine, for “lunch.” It's so nice that so many of my Ketchikan friends have flocked to the Seattle area. I told Anne that even under the morbid circumstances, I fell lucky to be able to see my friends so often on my Seattle trips.

After lunch, Caspian and Mariah dropped me off at Anne’s office in downtown and I immediately started feeling sick. I quickly popped some anti-nausea meds so I wouldn’t throw up on the bus ride home. They said each treatment would progressively get worse with sickness and I’m starting to recognize that.

Mariah and I saying our goodbyes.

I had a nice evening with Anne and Jeremy, but once again, it was one of those times where I remember I was there, but I can’t tell you the details. I remember Jeremy helping me measure out my medicine before I went to bed, nice guy!

Made it home (another one of those applause landings on the plane due to high winds) and was greeted by my cheerful family with a sign made my Lena and her grandma Jan. I’m glad I’m home too Lena.

Lena with her welcome home sign.

PS- I am a third of the way done with my treatments!

Sugar, Sugar

Thus begins the healthy eating phase in my life. It all started last month when I overheard Tamara my infusion nurse lecturing the man receiving chemo next to me on the importance of staying hydrated. “But I hate water,” he lamented, “Can I drink Gatorade instead?” Then Tamara quickly said, “Gatorade has sugar. Sugar causes cancer!” Um, excuse me? Did she just say sugar causes cancer?

Then this week I had two more run-ins with sugar and cancer. The first one came in reading a blog by a woman in Craig named Brynn who was diagnosed with Lymphoma about the same time my diagnoses came in. (Side-note: I feel as though I have a strange connection with Brynn. Though I’m not sure if we’ve met, I’m friends with her sister, and her brother was my favorite teacher in high school. I’ve been meaning to contact her and now that it’s in print, I really should since we’re going through some of the same things.) Anyway, Brynn wrote in her blog that she was eliminating sugar from her diet because of the cancer connection. Then today, I ran into my co-worker Abby and she told me she had all sorts of handouts for me on diets while undergoing cancer treatment. She told me to eliminate, you guessed it, sugar!

Finally I gave it the tried and true test- -Google. If you type “sugar causes” into the Google search bar, the first suggestion is “sugar causes acne” but the second is “sugar causes cancer.” The amount of literature is amazing. Mostly it says sugar feeds cancer.

I have always considered myself a healthy eater. We don’t buy beef and only eat game in our house. We eat fish and we get an organic veggie and fruit box every other week. I dislike the taste of processed foods and rarely have them in the house. Sugar is something I don’t consider a necessity. I can’t stomach sweets for breakfast thus eliminating things like sugary cereals, pancakes and French toast. The mere sight of maple syrup in the morning turns my stomach, which happens a lot since I live with a Vermonter. I’ll only order dessert in restaurants if they have crème brule. I don’t like chocolate, never really have. I make cookies maybe three times a year (my girls are going to hate me.) In the evening when I need a snack, I reach for salty foods instead. Okay, so this won’t be hard, right? We’ll see…

My friend Stephanie is a dietician and I’d love to hear what she says about this. She thinks high fructose corn syrup is the devil, but hasn’t said much to me about sugar. Unfortunately, Stephanie is traveling in Africa and Europe with her husband so I’m not able to use her as my personal resource when it comes to things like this. Stephanie always tells me everything is okay in moderation, though I think this time, I’m going to error on the side of caution and just cut it out completely. I hadn’t been diagnosed before Stephanie left on her trip, and she told me if I ended up getting diagnosed with cancer, she’d kill me. She also told me to eat an apple a day (a cancer fighter), which I honestly tried, but they are too sweet for me so I stopped forcing them down after day four.

I head out for Seattle tomorrow morning for chemo and will be there until Saturday. I was planning a trip to Piroshky, Piroshky to get my standard Vatrushka roll (sweetened cream cheese and raspberries) but I guess I’m going to have to get the sauerkraut, cabbage, carrot and onion roll which is equally as good. This also means Addison, Lena and Jan are going to be responsible for finishing off the cookies I made last weekend (it was one of the three times a year.)

Okay, off to e-mail Brynn and catch up on all my other un-answered e-mails. I’ve gotten really bad about responding lately, I’m sorry.