I have completed all my planned cancer treatments and as far as can be seen at this time am free of cancer. In 3 months my body will have healed enough from treatment for them to do a scan and verify this but until then I'm just delighted to be on the road to recovery and feeling good!
So here are some pictures from the last week...
Without makeup I miss my hair- the good news is that it is growing back!
These are of the radiation experience. They took them for me my last day. Monday thru Friday for the last few weeks I have spent about 15-30 minutes laying on this hard table while machines moved around me taking pictures and administering targeted radiation treatment. The mask was clipped to the table to keep me in the exact same position for every treatment. I usually took a short nap as soon as they would dim the lights.
On my final day (I was wearing pajamas because we had a pajama day at school and watched parts of the polar express) they gave me a certificate for completing my treatments and a bottle of Sparkling Cider (which I haven't been sharing) and I got to bring home my radiation mask. I have 6 weeks before I go back for a follow up. This will be the longest I've gone without seeing a doctor since March of last year.
So excited! Happy Christmas and a wongerful New Years to all of my friends and family! You have been a great support through this exhausting experience, I am grateful for all the kind words, prayers on my behalf, and the generous gifts. I feel blessed to have so many wonderful people in my life.
"We can’t predict all the struggles and storms in life, not even the ones just around the next corner, but as persons of faith and hope, we know beyond the shadow of any doubt that the gospel of Jesus Christ is true and the best is yet to come."
'Let Him Do It with Simplicity' Elder L. Tom Perry, Oct. 2008, General Conference
I began radiation a week and a half ago, which means I'm already half way done. So far the side effects are pretty minimal.
My skin gets a little red and tender, not painful, just tender, like my clavicle is embarrassed about something. If I run and try to breath ( I've found I can't do one without the other) my chest hurts just a little and I suspect I'm about to have a heart attack. I developed a sore throat in connection with a mild cold and coughing is a little painful. My doctor and I discussed this and determined it is probably because my coughing puts pressure on my radiation burnt insides. Swallowing is also painful because my esophagus is mildly burnt. Also I get achey, like sore muscles from a work out, in my shoulder blade area because that is where all the directed beams converge to exit my body. I'm a little more tired than normal but it's much easier than chemotherapy was so I'll take it.
In other news, my hair is still gone. I have a slight fuzz on my head, but it's still thin and with bald patches. My eyebrows have continued thinning but I suspect this is mostly part of their natural growth cycle and is mostly apparent because no new hair is growing to replace what leaves. I now draw them on with Anastasia's Dip-brow, some fancy makeup I bought at sephora after consulting one of their sales people. I use black eyeliner to make my weird eyelashes less apparent. I have also learned how to wear liquid eyeliner which I find exciting and fun.
Also, not appearance related, I have a second job. I started in October working part time at Peaks Ice Arena. I was getting bored, and it keeps me pretty busy. I can't decide if I actually enjoy it, I'm not sure I thought that through very well. I have to say, it is probably hazardous to make decisions under the influence of cancer.
I have been extremely emotional lately, sort of like it's all finally catching up with me. Every now and then I get upset about how hard this has all been and I cry a bit.
On the positive, life is still enjoyable and I'm meeting new people and starting new friendships all the time. This has been a wild ride.
I didn't realize so much time had passed since my last post, my family moved to Provo last month, I got a second job at the local Ice Arena (I work part-time with skate rentals and concessions) and I finished chemotherapy!
I had my last treatment on November 4th. I got really sick on the 6th and spent the whole day moving as little as humanly possible, and my eyebrows and eyelashes have gotten VERY thin, but it's over now and that is a GOOD thing. After I finished chemotherapy, this was the end of my 4th cycle (8th treatment) they had me go in for a fresh PET scan and found me to be very lacking in cancer cells, the official report was something about being much reduced and some fancy words I didn't entirely understand, but the doctor told me what it means is that I don't light up anymore under the fancy camera. The PET scan itself was actually pretty uncomfortable, I decided to have them put the contrast I drink into root beer this time and it tasted pretty gross so between that and my port being accessed to put in the radioactive sugars I was feeling kind of sick and when they went to clear my port at the end I started puking. 4 rounds of chemotherapy and I only throw up once a tiny bit but one day of contrast and I managed to empty the contents of my stomach afterwards. We had my favorite dinner afterwards to comfort me. Homemade Mac'n'Cheese. :) I have a good mom.
Since the scan was so good we talked about what the next few month and hopefully years of my life will look like now that my treatment won't be with my primary oncologist every time. For the first while I will see my oncologist every month, and then it will eventually be every couple months until I only come in once a year and then maybe less than that. Slowly getting my life back.
Today I went in to get things started with my radiation treatment, even though my scans look good they are going to treat it with radiation to clear out anything extra and hopefully keep it from ever coming back. At my appointment today we set up my plan with my radiation oncologist, I will have 15 treatments starting December 1st and going on 5 days a week for 3 weeks. For my treatments they made a special mask of this hard plastic stuff that goes over my head and shoulders and locks to the table so that they won't have to use tattoos to direct the radiation. At some point maybe I'll get a picture of it, it's pretty cool/weird. They said I can keep the mask when my treatment is over.
After the mask was made they did a few CT scans to get specific locations for my treatment plan, I got that fun iodine contrast again that makes it feel sort of like you've peed your pants. This sensation isn't so bad but I did feel squirmy feeling as I got all warm while I was locked down to the table by the mask. I'm glad it didn't take very long.
So now I'm free to do as I please until December 1st. My blood counts are still low and my hair is not yet returning, but I am gradually feeling better. Already I think my energy has increased and I am less afraid to use my muscles. I think I'll be ready to get back on a fitness plan in the New Year and I am definitely looking forward to that.
I was in way to good of a mood going into my cancer treatment today, I haven't had a lot of bad side effects from my treatment and have basically decided I am invincible... great for my ego. So I decided to ask a question on something I hadn't thought about before. I was like, "Hey, so if I haven't done the treatment thing when I did how long would I have lived?" And my doctor was like, "well we would have been looking at something in terms of months, not years, considering where you were when this started, probably about 6 months."
So that was my moment of embracing this idea of mortality. Thankfully, I noticed something wrong early on and I got to avoid ever feeling better, mostly it's just felt inconvenient and I only occasionally embrace my desire to sit somewhere feeling sorry for myself and cry a little. I am so excited for the next part of my life though. So excited.
Today is day one of cycle 4, my 7th treatment. Next time I come in I'll be getting scheduled for a PET scan to see how much cancer we have defeated. I'm hoping it's a lot. I think I've been really fortunate so far, and I hope to carry that on.
3 weeks ago I met with a Radiation Oncologist and we figured out some of my treatment plan. At the beginning of my treatment we had planned to go through 6 cycles of Chemotherapy which would be 12 treatments total (2 treatments per cycle) and then do some radiation. After my doctor met with the oncology team and discussed my case a few other options were put on the table, there were 3 radiation specialists at the meeting and they put forward 3 plans of treatment. One plan was the original, another was to have 6 cycles of chemo and no radiation and the third was to go 4 cycles of chemo and then radiation. The last one appealed to me most and it is the plan that we are currently carrying forward.
This means that I will have two more treatments, one in about a week and one the first week of November, then I will get another PET scan to see how my cancer has been changed by the chemotherapy (grown, killed, shrunk, whatever) and special mask type things will be made to help them target the radiation to the areas that need treatment. In December I will have radiation 5 days a week for 3 weeks. And then I should be cancer free for the foreseeable future.
To the present, I had a treatment last week and I have been doing fine. I get sick about the same every time and I am nauseated almost all of the time now. Something I don't thing I mentioned before is that chemo makes me really bloated (or gassy) which is kind of painful because its like I have all this air inside that just won't come out. Also, my pants don't all fit at the waistline anymore, kinda embarrassing, but it's temporary so oh well. Over time the chemicals build up in your body so I recover less and less between treatments. I would say I am still doing pretty well though. I'm too stubborn to be sick.
Work has been super fun, I enjoy working at an elementary school, I still don't want to be a teacher, but it is a great place to work and I enjoy the students. I work in Kindergarten for 3.5 hours and then I assist for an hour in 2nd grade with math and 45 minutes in a first grade class. Some days my job is a cake walk, and some days it's an adventure.
So, I have mentioned that I have a lot of hats and a couple wigs, and I am including a jumble of pictures that should allow you to see an assortment of what I have acquired from my family and friends over the past few months. I have plenty of headwear choices, as you can see.
I had to miss work today. Yesterday's Chemo left me pretty miserable. I forced myself to throw up a bit last night though and that seemed to help the nausea a little.
Sometimes it's hard to remember the bigger picture in the midst of all this, I spent some time being nostalgic today looking at photos from before this was even a blip on my radar. I actually went all the way back to last winter, before I had my first surgery when I broke my pinky that is kind of when my plans for the summer started changing. It's weird to look back at that time and realize I had no idea what was coming. And I really didn't appreciate my hair enough.
Anyway, it's been a fairly good week. Work is going well and I have stayed busy. I read like crazy since exercise wears me out so much. And honestly, given a choice I would always pick a book. I love a good story.
I think that is everything. I'm hoping to be back in the swing of things tomorrow, but honestly, I still get scared sometimes. Hopefully I can get through a day of work.
So, I haven't been keeping up with this, I've actually become pretty busy in the last while and its been harder to have the energy for thinking about posting. Almost 2 weeks ago I got a job working part time as an AM kindergarten aid at Freedom Elementary school in Highland, Utah and I have been having so much fun, after my treatment last week I was still able to work but I was very tired and spent most of my free time sleeping. I really enjoy having more productive things to do and the kids are so fun!
I have received a lot of hats in the mail, I was going to take pictures of all of them but I am kind of lazy, maybe by next time I post., I do love them all though. I also have a beautiful wig that I wear to work every day, it is amazing how normal it looks, it's even in a color that I have actually had my hair before. It's nice to have days where I just feel like everyone else, but I'm also always glad to take it off and feel the Sun on my scalp. :) I have adapted well to not having hair on my head, I rarely miss it.
Chemo wasn't too bad this last round, I was less nauseous but the nausea lasted longer. Chemical smells and sometimes sweet smells make it worse. I eat pretty much anything and everything. Eating really seems to help settle my stomach.
At my last appointment my doctor told me that he had just gotten my case presented to the group of people they confer with on treatment plans and there is some debate about how long I need what types of treatment for. I was originally planning on 6 cycles of ABVD, and they are considering doing only 4 cycles and then focussing on radiation. Or a few other options, but I haven't decided yet. In a few weeks I will meet with a radiologist and we will discuss my options for radiation.
I think that is everything new.
Here is a picture with one of my favorite hats, it's made of a bamboo spandex blend that is super soft and stretchy, I love how it feels and I'm just lucky that it looks good too because it's so comfortable I think I would wear it even if it didn't.
I'm going to skip around a bit today so I've titled sections and people can read only as much as they feel like. It's a little out of order.
No Hair
After my last treatment for my first round of chemo I shaved my head and I talked about it then but now I have had time to experience it. Due to the kindness of friends and family I have kind of a million scarves now and I've been learning a lot of style tricks and stuff to help me feel confident with my naked scalp, but it's still an interesting experience. For example, I spend a lot of time trying to negotiate that line between fun/cute and gypsy/pirate. I really like the baseball cap/scarf combo. Its like having a really colorful ponytail and I can handle that. Or sometimes I'm just bald because having stuff on my head is hot (warm) and I need a break. Also, I have adapted well to shaving my own head. The goal is to keep a neat appearance that I can feel comfortable with, and so far so good.
On the upside, my body hair, legs, etc., has sort of stopped growing back in so shaving is still faster than ever. Sometimes in the shower I am sure that I should be taking more time, but I run out of things to do, so, too bad.
So we have a variety of bald pictures here from over the last week. I feel like this is a pretty good showcase of my looks and now I'm going to move on to another topic.
CHEMO #3
So its a little confusing because my chemo happens in two part cycles two weeks apart. Two weeks ago I really had Part 2 of cycle 1 and today I had part 1 of cycle 2. I have been quite melodramatic about it. For starters, when I got in my blood refused to draw until the 6th try. Just thinking about it I feel gross, the flushing fluid leaves a nasty taste in my mouth and by the time we finished I was sick to my stomach. What better way to start 2 hours of chemotherapy, am I right? So that was fun, the doctor says I look great, he didn't have any blood counts to look at, but my heart, lungs, and extremities appear to be surviving the chemicals being thrown at them, and I am maintaining a healthy weight, I credit it to a diet of cake. Wedding cake, cheesecake, and more cake. I ate a lot of treats this last little while and I am not at all ashamed of it. I put on some weight.
Fortunately I knew this would not be an issue as I was lying around the living room telling my family that I might be dying and making funeral arrangements. I have since improved a little, but being nauseated is tough stuff. I'm also overly dramatic when it comes to being mildly ill so my claiming to be near death was no big deal. I like to make a dramatic show so I can laugh about it later in the privacy of my room when I decide to feel better. Really though, I suspect that Part 1 chemo cocktail is was less pleasant than part 2 chemo cocktail. Needless to say, I am on a tough diet of not wanting to eat but needing to eat and I don't think weight it going to be an issue now that the parties are over.
In case you are intrigued about my funeral plans, which will be occurring in about 70 to 90 years, I want to share a tidbit, I'm a little morbid and I have been making plans for years. I don't think I will need to have any speakers because I'll have released a book compilation of my journals by this point, still awaiting title, and that will be old news. So I have selected music. If I had to pick a hymn or two I would stick to classics. Nearer My God to Thee, Each Life That Touches Ours For Good, or Be Still my Soul have always been favorites. Maybe a finale of There is Sunshine in My Soul Today. If I could branch out, and I would love it if they did I have chosen the following to be on the playlist.
'Til Kingdom Come - Coldplay
Now My Feet Won't Touch the Ground - Coldplay
Blackbird as in Across the Universe by Evan Rachel Wood
FUN STUFF (When I do normal things like have a social life)
These last two weeks have been SUPER fun. I got to spend time with a lot of friends, many of whom I do not see regularly and I was extremely pleased to see despite the fact that I am genuinely sickly all the time it was awesome. My friends the Rhodes family was down helping Mitch, a good friend of mine, get moved in for grad school at Utah State and I spent an entire day with them at the Aquarium and then dinner. So good to see them.
After that I was out for a few days because I had a chemo treatment, and then I went camping with friends from my ward over at Utah Lake. I love my ward because even though I moved in and then pretty much have just been sickly, I was recovering from a broken pinky, and then this stuff with cancer, I feel like a normal young person most of the time when I'm with them. It has been a really great opportunity to make some good friends and feel really included.
The next day was my first day bald, I had a really close friend get married up in Salt Lake and I was able to spend time with quite a few people who were a significant part of my college years. I love my friends. I get myself in trouble all the time by saying people are my best friends, because can a girl really have 27 best friends? I do, because my list of people I love is always growing. The reception was fantastic, I feel so blessed by the people that my friends choose to marry because I feel like they generally choose people who I really love and it seems like they really love and seem to be themselves, but maybe a bit better, around.
Our next week was increasingly fun because I had two days of non stop play until I was tired and cranky, with my friends Emily and Kyle. Should I person with a low immune system go to an arcade for hours? I don't know, but I don't think I have suffered for it, and I definitely don't regret playing so many games.
I followed that up with a road trip, my dad did most of the driving because he is basically a super dad and we had some fun. We stopped and stayed with family in Boise, I got to go spend time with my Grandma who has been having her own health excitement this year but has a very positive attitude about it all and is looking good. I also saw my friend Nena and had fun catching up and seeing a bit of the Real Life behind the scenes art studio. It's amazing and inspiring to have such talented people in my life. I feel like I can do anything.
We dropped in on the Wyatt family in the middle of moving from Ellensburg to Yakima, I'm going to miss that house that was like my home while I was in college even though I never lived there. They were great examples to me, I was always learning things from Paul and Brenda that helped improve my life and set better life goals, but more importantly they are kind, loving, fun and super welcoming. I know I'm not the only student who spent time there who considers them an extension of family.
I made it to Seattle, my dad dropped me off downtown near the Westlake center, which of course was crazy,y all day. I went down to Pike Place market and mingled in the street craziness that is down there, ate grapes that tastes (no kidding!) like cotton candy and then sat down in Barnes and Noble for food and a book. Then I had a great dinner with my friends Kate and Annie at P.F. Changs. Love those people, love that place. Finished my day with a Ferry ride to Bremerton and then a fin visit with the Crenshaw Family in Port Orchard. They have been great family friends and it was fun to catch up for an hour.
I got to see quite a few friends in Port Orchard, I spent the night at the home of Mary Felts who is an amazing woman. I don't think she ever stops going and doing good things. She is so aware of other people and she is always one of my favorites to visit. We stopped in and visited my friends Ed and Linda Peterson, Ed and I share a birthday, bit he just won't let me catch up to him. This year he celebrated 90 years while I only managed my 26th. We then visited the congregation we were in when we lived there. It was so great to see so many faces of the friends and families that had such a big impact on my life for so many years. There is something to visiting people who loved you through all of your awkward phases, and keep loving you when you are all grown up. And to see so many of the children who have become teenagers and young adults. I love seeing the growing up faces of kids I got to play with when I babysat and taught nursery.
The whole trip was really for my friend Drew's wedding and that was a fantastic an beautiful experience out at Thornwood Castle in Lakewood. I found out that this was where they filmed Stephen King's Rose Red (a movie I haven't seen) and much of the set up and décor there is thanks to his specifications for the movie. All I know is that it was beautiful and I loved seeing so many people who have been so good to me over the years. Drew had a great surprise for my at his wedding (which was so thoughtful of him to put together during the hectic weeks planning his wedding and spending time with his wonderful fiancé, did I mention my friends amaze me?)
He gave me a deck of cards following after a tradition he and I had started years ago on a difficult college evening with a different set of cards. We had made these pretend fortune telling card that we called the Drawing Cards of Doom, he pulled them out at the weeding and I thought he was giving them to me because over the years we have passed them back and forth as a joke to who ever was facing the most challenges in life, a way to make light of the hard knocks we all face. To my shock he refused to let me have them and presented me with a new set of cards, the Drawing Cards of Hope. He and a group of friends had taken time to write on and collect hopes and dreams from strangers in the streets for me on playing cards. I feel more loved every time I think about it. Just the thoughtfulness and the time and effort so that I could have something around to cheer me up. So much better than our cards of Doom.
After that we came home and I got to go to chemo today.
Did I Mention Gifts?
I posted about the specifics on Facebook and I wrote the cards story here so I'm just going to finish with some pictures, no explanations.
Projects
And one of these inspired my start to a new project which I am going to offer a small preview of. I'm going to do a collection of short illustrated stories, and ideas from my life. The stories will all be true, according to me. This is not quite the final product, and I've only just begun, but I'm very pleased with it so far.
My hair fell out right on schedule. This last week I started losing clumps of hair like crazy until Saturday morning when I decided it was getting too hard to style and my super kind brother Sam helped my shave my head.
He thought he would be funny when he gave me a tiny Mohawk, but he told me later that when he tried to style it the hair just came out it his hand... I guess the joke was on him.
We did a bit of teamwork shaving my head, Sam let me take a few swipes at it.
The completed project.....
A funny hat I picked out a week or two ago came in the mail today.
I'm glad I still have eyebrows for the time being, hoping they stick around. :)
