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.