First Solo Metro Experience

Things I've learned living in/about Greenlake:
1. There are as many dogs as people
2. Dogs don't mind wearing soiled poop bags on their back as long as they get to go outside
3. Dressing up is wearing Lululemon
4. One out of two drivers stop for pedestrians (a great ratio for the city)
5. People smile when you walk/jog by
6. Bus routes are convinent to get into the city, or anywhere else you need to go

So far, this neighborhood is perfect for me. I am officially in love.

Our house is a complete disaster zone, although better by the hour.

We live one block from a bus route and three blocks to another. This afternoon I am going to attack the metro to get to my doctor appointment on Capital Hill. I am nervous and excited to navigate the city alone. We'll see how it goes! It had been sunny and warm, but the clouds are rolling in. I might be walking in the rain. I guess it's now or never - maybe it's best I just jump in and get my feet wet :) It's going to be raining indefinitely for the next 10 months anyway. I kid, I kid - I'm sure there'll be a few rainless cloudy days too.

Little Bad Mole

About a month ago I had an appointment with a dermatologist to check all of my moles. Unfortunately, two moles were removed and one of them came back with precancerous cells. Although it's not a very big deal, the pathology showed that there is still some precancerous cells in the area around what was previously the mole. I was supposed to have a one hour procedure tomorrow to remove the rest of the dangerous area, but this morning I panicked.

You see, the area in question is on my breast. The doctor already removed a big chunk and she wants to go back in. I'm antsy, nervous, apprehensive, and all around sick about the thought of going back in. A woman's breast is a very private area, and is such a symbol of femininity. The first procedure took three weeks to heal, and now it's a big ole' lump of scar tissue.

I might not be able to avoid another procedure, but I cancelled the one for tomorrow which was supposed to take place in Wenatchee. Instead, I called Virgina Mason in Seattle which is a leading medical center for dermatology. I have an appointment for Friday to have an initial meeting, at which point I will have a referral for the surgery.

It's odd, I have been more upset about this silly little procedure than my brain tumor surgery. At least I now know that I will be in the hands of the best at Virginia Mason. I've learned a lot about medical things in the past year and a half, one of them being, go to the best whenever you can. It's your body, and anything less than the best is less than you deserve. Follow your gut and don't feel bad. It's your body and you are your best advocate.

I know that this goofy little mole thing that I'm cleaning up on my breast is absolutely NOTHING like breast cancer, but it makes me feel for all of the women that have (or have had) breast cancer. That is some scary, scary stuff and for me it has been incredibly violating. I have a whole new respect for breast cancer fighters, survivors, and victims. I admire you. Truly.

Crab Apple Kitty

Stella is in kitty cat heaven. At the vet's office, she was gently given a sedative and she walked into my lap. She relaxed, and when it was time, I laid her down onto a blanket. They injected her rear leg so that I could pet her head. I laid my face onto the table, and looked into her eyes. I told her how wonderful she was and what a good girl she was being. I watched the light go out of her eyes, and although I was sobbing, it was a relief to know that she wasn't in pain any longer.

It's amazing how quickly health can deteriorate. Yesterday was the first time I've watched life go out of a body. It was not easy. All I can hope is that when I die, I will have someone petting my head, looking me in the eyes and telling me kind things.

It wasn't just me with Stella yesterday, it was also my mom and dad. We all cried. We all loved her. I couldn't help them, I didn't have it in me, but they buried her underneath their crab apple tree. It's a befitting location since she was also known as a big B to so many. My mom always laughed that I would call her Pretty Pretty Princess. Stella was a tough, sassy, sharp clawed time bomb that was not safe around children or most adults. But to me, she was my tame little kitten.

Good-Bye Old Girl

Breakfast Soup/Smoothie

It looks gross, but I'm telling you it's delicious. Here's how you make it. Chop up one nectarine (make sure it's super ripe - very fragrant) and toss it in a blender. Once it's blended fill the blender full of spinach (stuff it in there). Add water to the thickness you desire. Add 1-2 tablespoons of flax seed oil. Blend it all together until it's thick and kind of frothy. Aaaaand, serve. It's delicious. You can't even taste the spinach. In fact, it tastes like a nutty nectarine drink. It is wonderful!

That is how I started my day. I'm trying to be good to myself because today is the day that my baby princess Stella the cat will be leaving this world. I slept on the floor with her last night in a sleeping bag. She has trouble getting onto the bed these days. I've cried and cried, and cried and then cried some more and I know that I still have hours of crying in the future.

As I told a friend in an email today, since I don't have children, this cat has been my baby for the past eight years. She was a stray that needed love, and I was fresh off of a disastrous breakup. My fiance called it off less than two months before the wedding by using the words, "I'm not attracted to you anymore." If that doesn't hurt, I don't know what does. Mark that down as possibly the worst breakup line in history. My parents helped me move from Texas to Wenatchee, Washington and that is where a sassy, headstrong cat came into my life.

Ever since we tamed her, she has followed me around like a shadow. She has been a rock in my life, a confidant, a snuggle buddy, and entertainment. She makes me laugh so hard.

The other day, while I was packing up for the big move, I found a journal. It was from several years ago. I had started writing to an unborn child, a child that I hoped I would someday have. In it, as I was writing, Stella came up and curled up on my lap. She always had a sense for when I needed love. You see, I was married before Danny (it was a few years after the bad breakup - my twenties were quite eventful). On the day after the wedding, my husband told me he no longer wanted children. We had talked about having children the whole time we were dating, and then all of a sudden, in one day, a very important after the fact disclosure happened. I should have just annulled it then, but I thought that I had a responsibility to my husband, and the ideal of marriage. Three years later, the inevitable happened. It wasn't just the child issue, it was everything, everything was wrong. My main point is that I had several very sad, very hard years. I felt isolated, unloved, and trapped. Through it all, I had Stella. She never left my side. We gardened together. We went on walks. We cleaned the house while I cursed her in jest for being so hairy. She was my baby. Even when I would go on trips, she was always waiting for me, excited to be with me, always happy or ready for a nap.

Sometimes a pet is just a pet, a fun little buddy to make you laugh or enjoy for entertainment purposes. Stella was a friend. One of my best friends. 

I know it's time to let her go. She just threw up again last night even though she has been on two different types of medicine, one of them twice a day. It's so hard to play "God" and put her to sleep. It feels wrong, but it feels even worse to make her suffer. She's in a lot of pain, and it hurts me to look in her eyes and see the sadness.

Enjoying Life's Pulse

We should have the keys to our new place in Greenlake in two weeks. Fun! This move signifies freedom for me. I will be able to walk all over the place running errands. It's literally thrilling. My heart starts going crazy just thinking I'll be able to take care of myself, and the daily things for Danny and I. It has been painful to be stuck in our Wenatchee home, isolated from humans (other than my parents and the friends that stop by). I can entertain myself, I like to listen to music or do things around the house, but there's something about being around people in public, looking at life as it goes by. It's fun. It's therapeutic and magnificent. Life has such an amazing pulse, it's in humans, in pets, in the animals in nature, trees, plants, bugs, even the wind - and when it's all combined, when you look around, it's a lifeblood.

Breakfast On The Patio

I've already been packing for a few hours this morning, but it's time for a breakfast break. I toasted a piece of Dave's Killer Bread, sprinkled an egg with loads of turmeric, and chopped a clove of garlic for the top, and I've got my broccoli tea. I would have added sprouts on top of the toast, but I'm fresh out. It might sound like a crazy meal, but it's delicious and full of cancer fighting elements. Turmeric is insanely important to fight cancer, it's right up there with the brassica family.

I think the hardest part about dealing with cancers and tumors is the diet. There are so many different voices from specialists and they definitely don't all agree. Each illness varies, with the exception of sugar. Sugar feeds cancers and tumors. Sugar is incredibly bad for you. The dispute falls between the doctors that believe that all sugar is the same, and others who still recommend fruit in the diet. (The doctors who recommend removing fruit from the diet exchange the fruit for supplements to get the essential antioxidants and other benefits from the fruits without the sugar.) Some strongly believe that not only breads, pastas, and rice need to be avoided, they also want whole grains out of the diet. I just know that I can't live without some whole grains, so I'm still including healthy whole grains, but keeping the carbs as a small portion of my overall diet.

The brain tumor suggestions for diet is a complete mind game. It's tricky, it's frustrating, and if you over analyze each piece of food, every meal, looking for failure, it will make you crazy. It's impossible to overlook diet, it's the number one way to try and slow the tumor growth but I still have days when I eat poorly. In fact, for the first time, Danny and I went camping. I hung out with our friends eating Cheetos, and Polish sausages, but I'm still sick from all of the bad food. That's the thing that's crazy. If you eat really healthily, if you take a day or weekend off, you will pay for it. When I woke up on Sunday, all I wanted was a cabbage salad. Sounds weird, but my body was craving the crunch and the way I feel after I eat it. 

Our First Camping Trip

Tapering Off

Today is the first day that I'm not taking an anti-seizure pill (although I have to take one tomorrow). YAY!

Let me explain. Originally, I was prescribed 1000mg of Divalproex a day. Last week, I only took 500mg per day and now, I'm down to a pill every other day for the final week. By next Monday I should be done. I'm FREE! Hopefully, not only prescription free, but also seizure free.

I want to thank my friend Nancy who is a pharmacist. I was adamant to get off of the medication, and my nurse at the UW, as soon as I told her I was not going to follow her standard of care, never again responded to my emails for a taper down schedule. So, Nancy helped me plan a tapering of the drugs and I really, really appreciate it.

I have been incredibly fortunate to have so many people helping me throughout this journey. At each turn, I get great support.

I'm still scared to have a seizure, but each time the fear creeps into my mind I take a nice deep breath, and exhale slowly. I will not live in fear. I will not take drugs that wreak havoc on my body and mind. I will not give up. I will not just do what the doctors tell me to do. I will make my own decisions. I will research my options. I will try to keep my care natural. If my health deteriorates, I will reevaluate.

A final email from Walt (sent to all of Dee Dee's friends), Dee Dee's husband, which I received this morning:

Hello all, 

This note is to let you know that Dee Dee passed away in her sleep early this morning. It was a long journey for her and we trust she is now at peace. I know how much your love and support meant to Dee Dee over this last year. Thank you for that. 

We plan to have a gathering at the Senior Center next week and will send out a notice once arrangements have been made.
 
Walt

May Dee Dee rest in peace, and Walt know that he's loved. 

Prayers For Dee Dee

I received a very sad email this morning. You may remember Dee Dee Pearce from the comments on my blog. Dee Dee has always shared kind words of inspiration, always lifting me up. When I started my struggle, she was dealing with some abnormal breathing issues. The doctors ended up finding a large tumor behind her lungs (which they believed was benign) and as things progressed, it turned out it was lymphoma. (I'm simplifying her journey here - it is long and arduous, although you wouldn't know it by her attitude.) I'm very, very sad to share that her condition has greatly diminished. For islanders, you may also remember her as Diane Pearce. She gave many children (including myself) piano lessons. Here is the email, please read it below and send your love, your positive thoughts and prayers her direction.

Hello all – It has been quite a while since Dee Dee’s last update, so I will fill in with a current status report. A little over three weeks ago, Dee Dee’s health started into a steep decline. Her strength has eroded daily, her appetite has diminished, and now she sleeps most of the time. A hospital bed was brought in for two weeks ago which has made her far more comfortable. She is frustrated because she has lost her ability to speak, for the most part. A few of Dee Dee’s closest friends and I are providing 24/7 care. Dee Dee enjoyed several home concerts provided by our musical friends. These were a real joy for her. Though she is too tired now to receive visitors, I know she cherishes the memories of those visits as well as the many notes, calls, and cards from you. Thank you very much for your support during this time. 

Walt

It breaks my heart to think about Dee Dee in pain, unable to do the things that she loves so dearly. She loves her horses and music; her joy is in the beauty of nature and those around her. Dee Dee has been a rock in my support system, and I am so grateful for her. Please help me send love waves her direction so that she can have a full warm heart, no pain, and more energy so that she can visit with her husband and friends.

On another disappointing note today, my cat is very sick. The vet thinks it's bone cancer. I know it sounds crazy to love a cat so much, but I've been crying all day. I pictured her, Stella the Pretty Pretty Princess (a nickname that I always took seriously, but everyone thought was a joke because she used to attack people), on my lap until the end. In fact, I was more worried that Danny might get stuck with too many pets if I die. It didn't occur to me that she might die first. How selfish of me. So, in the meantime, by the recommendation of the vet, we're going to pump Stella full of oral pain killers, vitamins, steroids and antibiotics, hoping that it makes her better. It's not lost on me that I'm doing to my cat what I won't even do to myself. At least I have a few weeks before I have to make a decision about Stella. I can't even think about it without sobbing.

The bright side of this tough day, has been the decrease of my medicine. Instead of just becoming despondent with all the bad news, I took a 2 hour nap then got back up. I did a load of laundry and started a new batch of sprouts. Just but cutting back to one 500mg pill a day of the Divalproex gives me more energy. The energy helps me conquer more, and put things in perspective. It helps me keep a positive spin. Although I've been crying off and on all day, I'm still functioning. That's big news for me. It makes me feel strong and capable. Capable of anything, even kicking this tumor's butt. I'm just sad that we can't all kick cancer's ass together.   

Good-Bye Anticonvulsant.

Sorry, I've been off my computer for a few days. My mind is mud. I can't think. I have had nothing to write because my brain is a slug. I have feelings and thoughts, somewhere in my gray hazy matter, but I can't connect to them. I can't even do more than basic sentences without needing a break.

Doctors don't even know what exactly causes seizures. They think it's an overactive brain (I'm simplifying here), therefore they prescribed me a drug that blocks or slows specific neurotransmitters. Now, I'm running on a portion of the firing that I usually have. My brain is half asleep. Think lobotomy.

Yesterday, it got so bad that I emailed my nurse and told her I want off the Dekopate. I asked for a schedule to decrease the medicine. It's too much. Also, over the weekend, I noticed a small rash on my right shoulder. In the Patient Advisory Leaflet (pharmacy info) under the Side Effects portion, it says, "Symptoms of a serious allergic reaction include: rash..." It continues to mention that the rash is a sign of severe liver problems. That sounds fun. All in all, I'm exhausted, mentally slow, my vision is blurry, my moods are horrible, my heart palpitates and I'm just a fraction of myself. I can't even write. I can't think.

So, today I did not take my morning anti-seizure pill. I emailed my nurse and reminded her that I want a schedule to decrease the dosage, and I mentioned the rash. 

I refuse to live like this. I might not be able to control some of the biggest things in my life; I can't drive to get to the grocery store or even a doctor's appointment. I also can't change the fact that I have the tumor nugget growing in my brain. But I can limit the bad drugs that ruin the quality of my life. It's one small step that can help me be happier.

On this pill I feel like I'm slipping away. I just want to get back to being me, even if that means a seizure here or there.

Sprouts Days 2 & 3

Day 2

Day 3

The babies are growing! Each morning and evening I fill the jar 2/3 full of water and swish it around. I drain it and leave the jar propped so that any excess water will drip out. I keep the jar in a dark area, nice and cool. The only problem, so far, is that I want to eat them now. I can't wait to be able to eat them every single day!

Sprouts X2

I'm starting a new round of broccoli sprouts. Hopefully, this time, with all of the helpful suggestions I will be successful. I feel like the instructions in the pamphlet were lacking detail. It was confusing. Either way, I'm trying again. I'm starting with three tablespoons of seeds and about a cup and a half of fresh water. They're going to soak overnight in a dark place and rinse them in the morning. I'll let you know how it goes :)

Minutes Into Soaking

 

I'm Becoming A Mossback

Well. Things changed again. I never started taking the new pill. When we picked up the new prescription the woman behind the counter said, "That will be $192 please." I looked at her wide eyed, and quickly asked her if I HAD to buy it. Fortunately, she was incredibly kind, and said absolutely not. She recommended that I contact my doctor and ask for a different, more affordable drug (for the record $192 was just the portion that I had to pay out of pocket, the full price tag for the drugs for those without insurance was almost five hundred dollars. Yuck).

I have yet to contact Dr Graham. I'm so over this stupid anti-seizure debacle. It's never ending. Right now our lives crazy anyway. I'm sorry to drop this news over the blog instead of talking to everyone in person, but it's too hard to contact everyone. Danny got a job back in the elevator/escalator trade so we're moving back to Seattle! It's a fantastic job, and I'm excited to watch this next phase of our lives unfold.

Within the past five days Dan got a job, started safety training, we researched places to live (we already knew the areas we wanted to live), found the perfect place, and signed a lease. We move in on October 1st. It is a 6 minute walk from our new home to a PCC Natural Market. It's also a fifteen minute walk to the library. To save the best part for last, we will be living one block from Greenlake where we can walk on the trail. We get to have our dog Emma, and cat Stella. It's very exciting! Obviously, it's going to be incredibly hard to move away from my parents, and all of my amazing Wenatchee friends, but we will come back to Wenatchee often, and our friends will always be welcome in our guestroom.

It's going to be a healthy lifestyle change for us, this new move. I'm trilled that we have the opportunity to walk for groceries, and books. I can't wait to link my hand in Danny's, grab Emma and walk on the lake path. Our new little home has a communal garden which I can weed and eventually contribute to, and I'm thrilled to learn about the plants living on the wet side of the mountains, it's a whole new zone. This home is such a gift! What an amazing opportunity! Now I will be able to walk everywhere. I will have foot freedom!! WOO HOO!!! I had been very isolated since I could no longer drive. I feel a huge weight off my heart. I'm ready to explore and test my limits. Maybe, eventually, I'll even find a way to get from our place to my oncologist's office through the bus routes. I've only ridden a city bus once (thank you Auten, that was fun!), but I want to become independent again. As long as I don't have a stinking seizure in public. That would be embarrassing.

As for the anti-seizure medication challenge, I'm taking a break. I'll still keep taking my current drug to appease my oncologist, but if things worsen I'll contact her and try again. It's tough. Danny and I talked about the whole medication issue again last night and he strongly feels like my current drug is not a viable solution. But what do you do when things are so busy, life is changing quickly, there's packing to do and a move across the mountains. We still need to maintain daily life, and I feel like on this medicine alone I'm barely keeping my head above water. Additional medication might cause me to sink. Sometimes it's simply a fact of bad timing and if we do too much at once, at this point, I might explode. I guess Divalproex is going to have to be a stop-gap. We will revisit the anti-seizure medication next month. In the meantime I think I'll try to do some extra meditation. It couldn't hurt.

Meds Meds Meds

Sorry it's been so long. Our lives have been nuts. We've traveled from Wenatchee over to Seattle, then back to Wenatchee and then within 24 hours we headed back over to Seattle where we've been for the past several days. We're trying to get my anti-seizure medicine dialed in. Our first appointment was with a neuro-oncologist, and she seems to be incredibly kind (we had never met her before). We talked about the different side effects from the medicines and they all have very similar problems. Mainly depression, suicidal thoughts, suicide attempts, irritability, anger, panic attacks, violent attacks, frustration, exhaustion and weight gain. Of course, not all of the side effects occur in all patients, but I hate that I see several of them in my current drug and feel them in my daily life. It makes me feel trapped in my body. In the appointment we talked about the other anti-seizure medicine that I took before and after the brain surgeries, Keppra. I had forgotten the name, but I was quickly reminded by Danny that the drug had the same side affects as my current drug.

Anyway, Dr Graham (my new neuro-oncologist) prescribed a new drug and we went to fill it. After having read all of the paperwork I started freaking out. The drugs are so strong, and I would have to stay on my current drug for two months while slowly increasing the new drug. Double medicine? Seriously? I can't even handle my current drug! After the two months I could decrease the amount of the old drug.

The worst part though, is that the new drug carried an even more severe side effect on top of my current pills...if I was to notice any type of rash on my body, or sores in my mouth, I had to stop taking the drug immediately. The irritation showing the fact that it was causing my immune system to fail which could kill me. This drug literally can lead to death. What is more stressful than that?!? It's the whole thing I'm trying to avoid! Why in the world would I risk my health just to stop a seizure or two? I don't care if I never drive again, I don't want to take these stupid drugs! The neuro-oncologist took this side effect quite seriously, in fact one of her other patients called it "The Death Rash." She was teasing, but I believe there's always a percentage of truth in each joke. When we were leaving our appointment, Dr Graham gave her personal pager (for use day or night) for immediate contact in case the [death] rash occurred. Exactly what you want to hear when starting a new drug.

Later that night, Danny emailed Dr Graham, and we decided that this is the wrong drug. I told the doctor that I hate taking medicine already, I don't do well with extra hormones or medications of any type. I feel crazy from these stupid anti-seizure pills. Anyway, I told her I would be willing to try one more different type if we can get started within a week, but I'm not willing to wait for two months with progressively negative side effects. I feel like I need the benefit of the pills to out weigh the cost and at this point they certainly do not.

So, today I will start taking a different, newer pill on top of my current pills. It will be bad for a week and a half where there's an overlap of drugs at which point the old drug will be weaned off. I will be doubled up with side effects so I'll probably be a raving lunatic that wants to snap puppies necks. This is the last chance cafe for my neuro-oncologist to trick me into ingesting these poisons, after that, if this doesn't go well, I'm just going to risk it. Forget the anti-seizure medication. I don't need to drive, I can swim in the kiddie pool, etc. I'm happy that Danny and my family give me full support to make my own decision. They've seen the side effects and they are completely on board. In all of this craziness, their support puts a smile on my face, and with this drug that is definitely a difficult task to accomplish.