Thursday, February 27, 2014

Rainy day Portland

I thought today I would just write to write. I miss writing on my other blog, but have had such writers block since my diagnosis. I feel like words that use to flow freely in a somewhat eloquent way are jumbled up and spit out in an accent that isnt mine. So please bear with me as I try to reclaim my voice.

Today is a classic rainy day in Portland. The kind that makes you want to brew a cup of coffee and curl up next to a fire and read a book. Or in my case, seek the comfy chairs at a coffee shop close to my home and attempt to write! Today is a day where the clouds have no end and no beginning. They expand across the sky as one giant blanket. If you look closely enough you can see them moving in and out of each other; none of them relinquishing a glimpse of the so called blue sky. Its a rain boot wearing kind of day as the low spots in the sidewalk are collecting water and sometimes, it just feels good to walk through a puddle.

Portland is truly my favorite city in this country. I often talk about how much I loved living in New York and how Montana will always be home. Europe was pretty awesome and living in Denver was fun, but Portland (in my opinion) is one of those cities that truly captures every part of oneself. Portland ranks in the top 10 of a lot of lists, some funny and some respectable. I hear a lot of stories about how people came here for a job or school and just never left. And to that, I can relate.

I havent written a list in a long time, so I thought I would comprise a list of some of my favorite things about Portland. Here you go!

  1. Its okay (and maybe encouraged) to be a coffee snob. But with that comes some of the best coffee in the country. Half the battle is a good roast. The half is the brewing process which I would like to get better at. It is #80 on my list in fact
  2. Food carts and hole in the wall places are everywhere offering some tasty menus for low budget people like me. Anna and I visited one today for lunch and it was delightful
  3. Its a bike friendly city. I love biking to work and being able to transverse the city without threat to my life.
  4. The bridges, water and green landscape are abundant. I feel most at home when I am near water and even though the Willamette River isnt one to swim in, just hearing the water slap up against the edges is music to my ears on summer nights
  5. Because it rains. And because it rains, nearly everything is green. The rain affords lovely contemplative days like today. Because everyone knows rainy days bring moments of nostalgia and deep thoughts tend to outnumber the simple ones
Short list today, but it feels good to write again. I appreciate this rainy day. Perhaps this is just what I needed 

Wednesday, February 26, 2014

Accepting help

This whole cancer situation has taught me a lot about how to accept help. If you know me, you know that I am highly independent. My parents would probably say I was born that way. I dont remember a lot about my early childhood, but what I do remember is I possessed a strong-will from the start; or at least I have been told that ;)

That strong-will has gotten me many places. I firmly believe it helped propel me forward in academics. It athletics. In fighting for my place in this crazy upturned world. I know there is this innate sense of self-worth interwoven with accomplishments as a result of being independent. A drive that has always alluded to there being something more to achieve, earn and work towards.

I guess what I am saying is this: being highly independent and driven has been an absolutely blessing when it comes to achieving things, but has been hard when needing to accept help. This happened when I went through the set backs with my knee surgeries in graduate school. And now I am faced with it again.

Turns out, this cancer situation is allowing more time to learn some life lessons. Its okay to need help. Its okay to accept help when it is offered. In fact, it is somewhat therapeutic to allow others to help you; both for them and for me.  And I am thankful for the help. I know I could not get through this without the help of many. Namely, my mom. She spent over a month in Portland helping me both physically with tasks and emotionally with support. My friends who have taken days off work to spend with me. My coworkers who have supplied meals and small gifts that warm the soul. My extended network of friends who have sent cards, letters, blankets, hats, food, etc. I could not do this without you.

The rub is the gray area of that time when I feel I dont need as much help. The times I am building back up, gaining strength and can do more for myself. Those moments are the times that are incredibly hard to allow space to receive help. I am not good at that. I want to be independent. I want to do things for myself (if I can). I want to be me. And "me" is this highly independent, self-suffiecent person who actually gets enjoyment and if I am honest, a bit of my self-worth from what I can do for myself.

So this is an area of self-development for me. I am working on accepting help where I need it, but being true to myself when I know I can do something on my own. Its a humbling place to be.


Monday, February 24, 2014

Weekend #4... fatigue

On the Waterfront
Hard to believe I am on the other side of another weekend; particularly one following a 6 day treatment cycle. It feels good to know I have two weeks to regain some strength, build back up and face round 3 with vengeance. This weekend was pretty low key as I was really tired from treatment all week.

One of the biggest challenges for me has been adjusting my expectations of what I can do in one 24 hour period. If you knew me before, I was always on the run. Thinking, dreaming, planning adventures to be had in Portland, the PacNW or visiting friends in other parts of the country. I would think nothing of working a 10+ hour day and going to a concert that night only to work the next morning. Now this is not to boast in anyway, it is only meant to highlight the drastic difference in my current situation.

Jason and my mom after the cut
Friday the highlight was my mom cut her hair!! It is so beautiful and I cant wait to see how she will style it. She wanted to cut it short because I lost my hair, which was entirely too sweet of her. We found a cute look and my hairstylist turned her into one hot moma! Love love love her hair cut!!!

On Saturday I had treatment. Only about 1.5-2 hours. Received more steroids and more fluids to continue to flush my kidneys of toxic Cisplatin and to receive a shot to encourage immature white blood cells to exit large healthy bones to build back up my immune system. I could tell I was tired because normally I tool around on my iPad or read and all I wanted to do was lay there. After chemo we ran an errand or two and I knew I was wiped. We came home and it was all I could do to get off the couch. My mom went on a date with two of my professors from college (Julie and Jeanette) who took her out for dessert and tea for the afternoon. So lovely and sweet of them.  The rest of my evening was spent either in my bed or on the couch.

On Sunday my mom and I had arranged to take a walking tour of Portland. She had mentioned at some time while she was here that she thought it would be interesting to learn more about Portland. So we took a 2 hour guided tour of the city and walked about 2 miles. It was really informative and cool to learn some of those things with my mom. I was tuckered out after the tour so we came back home. I had church class that afternoon and again had to come home following it.

Managing fatigue is very new for me. I am not used to slowing down, at all. I am getting better at listening to my body, but it is still hard to slow down. This morning before I got out of bed I had some quiet time and allowed myself to just "be still" and completely shut down my overactive mind. It was a challenge, but was really rewarding once I was able to do it.

Portland Walking Tour with my mom

Friday, February 21, 2014

frustrations and attitude

Some of the hardest things while going through this has been watching everyone else's life continue, while mine seems to be on hold for a while. I will find myself reading through blogs I follow and see people moving onto the next phases of their lives. A huge part of my blogging in the past has been to document life adventures, thoughts on growth and life stages and the daily ramblings of my mind. I feel like right now I have nothing to contribute to that blog because I feel like my life is on hold right now.

I get that is not the truth. I get that its more or less just feelings I have because I have been knocked off the path I thought I would be on. And more than anything its been frustrating. But its not the first time my life has been pushed in a direction I didnt plan for it go down. And I survived that...

I truly believe you either control your attitude or it controls you.

Daily I am choosing to have a positive attitude. I would be 100% lying if I said this is easy. Some days it is. Somedays I can see the light at the end of the tunnel and take each step as it comes. Other days I just want to throw in the towel and be done. I am sick of feeling crappy. I am sick of feeling sick. But obviously that is not helpful.

So what do you do? I have decided to try and continue to live my life as best I know. I am continuing to invest in relationships of those around me and continue to grow as person. I am really excited about the class I am taking at church. It will really push me to grow and sometimes forced growth can be the best. Or at least the best to initiate the growth until I have the momentum to sustain it.


Thursday, February 20, 2014

Good News!

This week has been going well so far. I started the week off really strong. I made it through 3 treatments before feeling side effects. Huge answer to prayer. Today was my first difficult day this week. I started feeling nauseous last night and this morning. They added some anti-nausea drugs to my treatment today which has helped. I slept about 3 hours last night, so today I have just been exhausted.

Even in the midst of all the crap, I am still so thankful to serve a sovereign God who is faithful. Today I received good news and it is enough to sustain me for the rest of the week and well into the next phase of this treatment. The AFP tumor marker came back at a reading that was 2/3 less than starting chemo 3 weeks ago. This tumor marker is the most sensitive to knowing how effective the chemo is and I was shocked how low my number was today. It is still high and there is still obvious concern regarding getting it down well below 500 ng/mL. Right now I am sitting at 2300 ng/mL and was at 6800 ng/mL three weeks ago. Praise God.

In other news, I went out and about yesterday for the first time since shaving my head. Jenn and I went shopping after chemo yesterday and I even took my hat off a few times in REI to try on other hats. This was a huge step for me because I realized I just need to be myself. I am finding a new definition of beauty and though that is extremely difficult, it is necessary for growth and re-entry into society post-cancer.

Tonight's plan is to get rest so that I can face the last two days of chemo this week. I know I can do this and really kick this cancer's ass. Today's good news is just the fuel I needed to keep going.


Tuesday, February 18, 2014

Long hair gone...

No day but Today
On that first day meeting with my oncologist I asked him what side-effects I would feel as a result of the medication. His first reply, hair loss. My first reaction was... dang, that sucks. I kind of like my hair. And I have never had short hair in my life. Okay this will be a interesting adventure.

The time came on Sunday to shave my hair. They told me it would be about 2-3 weeks after starting chemo that I would start losing my hair. Monday of last week I started losing more than I typically lose in the shower. And then I combed my hair and streams of hair started falling. I have a lot of hair so I thought I could probably make it a few more days until needing to be drastic. I had decided at the very beginning of this journey that as soon as it started falling out, I would be proactive and cut it or shave it.

Towards the end of the week I noticed my hair was falling out rapidly and becoming matted and impossible to get my comb through it. It was time. On Sunday my mom and I went to a barber shop and had a lady shave it off completely. Down to 1/8 of an inch.

That first time I looked at myself in the mirror with stubble here and there, it sank in this is real. I have had several moments throughout this process where it feels like it has been happening to someone else. Especially the days I was feeling better and almost normal. But looking at my own reflection, it was as real as it could be. This is happening to me.

The hardest part about losing my hair is it is truly the first outward impression to the world that I am sick. Until Sunday, I could go anywhere and for the most part, not look any different than your average joe. This is the first big realization that I have cancer and I am sick.

I am doing better emotionally about losing my hair than I thought. So far, my mom is the only one who has seen my bald head. I think it comes back to not wanting people to feel sorry for me when they see me out and about. I just want to feel as normal as possible.

It doenst help that I live in a culture that values beauty above all things. Where makeup and hair style are typically the first thing that people notice when they meet you. Or used to describe you to others. But I guess this is my opportunity to make my own kind of beautiful and start to redefine at least my own cultural expectations. Work to redefine my identity. So cheers to being bald; at least for the near future.

Monday, February 17, 2014

Round 2

Today was day 1 of round 2. It went well for the most part. They have really dialed in on the nausea medication so I am feeling a world of a difference from my first week of chemo. I also (knock on wood) don't have the mealtic taste in my mouth like I really struggled with last treatment. The other good news is I was able to continue eating well today. I left chemo today quite tired and took a 2.5 hour nap.

I had some lovely friends from work come and hang out with me today.  We played Sorry at one point,which was awesome. We laughed so hard I am sure the other patients were annoyed. Oh well.

I will try to update every day this week. I have a few other posts scheduled, so you might actually get two posts in one day :) so keep checking back



Sunday, February 16, 2014

Weekend #3

This weekend I got to spend with part of my family. I say part because my dad is holding down the fort in Montana and was really missed this weekend. I would have preferred not to have had my incision reopened heading into the weekend, but thats how it goes I guess. Here is my weekend, mostly in pictures.

Saturday:
Burk had a climbing competition at Oregon State University so most of our day was spent watching him climb and hanging out with James, Lydia and my mom. It was really cool to watch my brother climb and he did fairly well in the competition. We all took naps at some point in the afternoon and had a chill evening, mostly being entertained by my nephew.



Sunday:
Went to church with Lydia and Burk and then headed back to Portland. It was so good to spend time with family and just have a relaxing weekend. I am taking a class at church for the next 9 weeks called God & Women: Theology of women and the church. I am really excited because it is taught by a woman I really respect and who is a phenomenal leader in our church. After the class my mom and I headed out to deal with my hair situation. More on that later.


Tomorrow starts the second cycle of chemo. I am not looking forward to it to say the least. Tomorrow my oncologist will check out the progress of chemo vs cancer by measuring a tumor marker in my blood. He will also look at my incision and hopefully (fingers crossed) will stitch it back up. And there will be no infection (double fingers crossed). And lastly, I get to start round number two of chemo. Lucky me!

Overall, this past week went well. I feel like I was able to gain some strength and started to eat normally again. I am praying we have the nausea figured out with the new drug. Also praying I will be able to eat all week and avoid dropping any more pounds.




Saturday, February 15, 2014

Dr. Visit

I have officially completed 1 cycle of chemo. Three weeks down, at least 6 to go. I had an appointment with my oncologist yesterday for a check-in to see how things were going. Overall, the past two weeks have been ok. I have maintained my weight, which was a big goal. I was able to be more active and for the most part, was feeling normal again. Until my incision started hurting more than usual and started getting red and tender.

My oncologist (who is also my surgeon) took one look at my incision and decided it needed to be opened for fear of infection. Due to starting a full 6 days of chemo on Monday and my immune system already being compromised, he didn't want to just put me on antibiotics. So he made a small opening next to my incision and drained fluid. The good news was it was not infected, but an accumulation of fluid. So for the next few days I have to pack it with gauze until the fluid is gone. Ugh!

After the appointment we drove down to Lebanon to my brother and sister-in-law's house for the weekend. Burk has a climbing competition today which will be really fun to watch! We got some good family time in yesterday and I am looking forward to today!

James climbing
Puddles!
Thank you for your prayers. I am frustrated about the healing of my surgical site, but realize it's just one more thing and I just have to get through it. Not looking forward to starting a full cycle of chemo again next week, that's for sure.

Making cookies with mom

Tuesday, February 11, 2014

Building back up

The way my chemo schedule works is the first week of each cycle is is 6 days in a row of 4-5 hours of infusions. The second two weeks I just have chemo one day each week. Those weeks are designed to give your body a break from the constant infusions and build up your immune system again.  Today was my day.

I woke up today in more pain than days previous. My incision has been bothering me and feels like it is laying down more scar tissue. I had some PT friends work on it early after my surgery, but it is apparent my body is not done laying down scar. Its a good thing I am a PT and know these things because my surgeon, nor any other health care professional mentioned the fact that if I didnt work on this aspect, my abdomen would be bound down and scarred up and I am only 29. Consider that my PSA :)

This week is the last week of my first cycle. In some ways, I cant believe it is finished and in others I cant believe I have still have at least two full cycles to go. I have been focusing on trying to build my body back up before going through the full week of chemo again. I went to the gym yesterday for the first time since diagnosis. It was short, but felt good on my lungs to breathe hard again. I am going to try and do more strength training too, especially my legs.

Its an interesting thing. Working so hard to feel good only to feel real shitty next week. I feel like I have almost gotten back to normal with so many things. Today when they accessed my port the sting of the needle piercing my skin took my breath away. How quickly our memory forgets pain only to experience it again.

Hope you are all having a good week. I continue to be blessed by all of your kindness in the form of words of encouragement, gifts and time spent with me. Thank you all so very much!