Kindness and Target

Wednesday, September 30, 2015

I woke up excited this morning because I was finally going to get out of the house. I had an appointment with my doctor, PT, and then my mom and I were going to run some errands. 

My excitement quickly disappeared once I went to get dressed. I was going to wear real clothes (aka not Nike shorts and a t-shirt) since I was going to be in public. Unfortunately the cool weather we were having while I was stuck in bed decided to leave and the high was 84. As if I am not over my summer wardrobe simply because it is almost OCTOBER, I have reached the point that none of my shorts fit.

 I hobbled over to my closet and picked out an outfit I thought was cute and made me feel good. I put my shorts on first and got so discouraged. They are huge. Before I go further, I know weight can be a sensitive topic so please don't read into this post that much. I like to share things honestly, so this is just something I am sharing as it is part of this "journey". I have lost A LOT of weight. I am talking like 30 pounds. I was weighed at the doctor today and it was the lowest it has been. I need to put at least 10 pounds on. It was definitely not all bad, but I really really really don't want to lose anymore. I really do my best to eat, but it is so hard when you are nauseous or your mouth hurts or your tastebuds are gone. Plus it doesn't help that sweet stuff is totally unappealing and my teeth are super sensitive so ice cream is not fun to eat. I know I need to eat just to get calories, but it is so hard.

Anyway, back to this morning. I was extremely discouraged by my jean shorts sliding on without even having to button them. Then I looked in the mirror and I am just so unhappy with the way I look. I do not look like myself at all. I look super skinny and my hair is a mess. It is completely gone on the left side and back, but I still have some on the top and right side. This is the point many people would probably shave it, but I still don't feel like that is something I want to do. It is just not me. I don't recognize myself and I certainly don't feel pretty. 

I know it looks worse to me than to other people. I just hate that the people I meet and will meet in the future won't get to see what I think I look like. I don't think I look like this, which is why when I do look in the mirror, it scares me. I promise I am not asking for compliments, I just need to share how I feel.

I ended up putting on a dress and a scarf, a decently cute outfit. I did get a lot of compliments at the doctor's office, which made me feel a little better. I had a good appointment too. Both my doctor and nurse keep telling me how close I am to finishing, and while I know that, it feels good to hear it coming from them.

After the doctor, my mom and I went to lunch. We ended up one of those awkward things where we had too much time to go straight PT, but also not enough time to actually do anything (especially considering how long it takes me simply to get to and from the car!). We ended up being early to PT (a first!), and he worked me really hard today. My knee is in a lot of pain! It is all good pain, but not really that fun. He said my range of motion is pretty perfect and I am able to bend my leg like normal again (to the same degree). I can also stand on my bad leg if I lean on something! That was a new development. I still have a ways to go before I am walking independently again, but progress is being made!

Even though it had already been a busy day, my mom and I made our way to Kohls and Target. I had to check out Lauren Conrad's Runway collection and I had a coupon, so of course nothing was in my size. I am about to go online because I have a 10 rewards coupon that expires tonight and that would be basically throwing money away, so we can't let that happen! 

Next we went to my home away from home, Target. I was in my wheelchair because it had already been a long day and that is simply a lot of walking. We took our time browsing. While we were looking at pjs, this lady walks by us then backs up. She said "excuse me, I just wanted to tell you that no matter what you are going through you are still beautiful" and then she emphasized it a few more times. I was so stunned, so all I could say is thank you (and I totally teared up).

Here this lady was just minding her own business in Target. She had no idea that this morning, I was struggling with this very thing (which I notice many days, but this day was especially bad). It made me think a lot about how come everyone doesn't do this everyday?? How much better would the world be if we could all be kind? Who doesn't need to hear something like that everyday? To know this lady took time from her own day to make mine makes me wanna cry all over. I wish I had seen her again. I would have bought her groceries or a candy bar or something. She has made my day.

Not to mention, this lady was not your typical looking Target shopper. She was someone I am sure has been judged before because of the way she looked or dressed. That makes me so sad. I am not going to say I don't judge anymore (because everyone does), but I do catch myself now. You never know what someone is going through. I have never been stopped in a store like this before and I would never have expected this lady to stop. You really cannot judge a book by its cover. 

This totally proves Target is indeed the best store ever. Good things happen there! I think I need to definitely go there as much as possible :). We also got Stanley a new cape and a dinosaur costume (thank you dollar section). I haven't gotten pictures yet, but I promise to share when I do!

I plan to pay her kindness forward (and all the kindness I have been shown). The world is a dark and scary place, we should all spend more time being nice. 

While I still am struggling with my looks, it really made my day to hear from a stranger. I just cannot wait to get the "me" I know back. And in the meantime, the temperature drops tomorrow so leggings it will be (I am assuming those still fit!). 

It started out as a rough day, but is ending on a high note. I am glad, since I will be stuck in the hospital a lot in the coming days. Hoping they are as short a stay as possible! 

I am Thankful

Monday, September 28, 2015

Again, in no particular order and not limited to:

I am thankful for modern medicine.

I am thankful for nausea meds and magic mouthwash.

I am thankful for family that has also turned their own lives upside down to get me through this.

I am thankful for great nurses and doctors.

I am thankful the scar on my leg really isn't that bad.

I am thankful to live in an area that has a good hospital system that is playing a large role in the cancer world.

I am thankful for friends and their sweet messages.

I am thankful for my dogs.

I am thankful this treatment will end. Some cancers require years of treatment.

I am thankful I don't have to spend countless months or weeks in the hospital. Really a few days is nothing. 

I am thankful to be able to eat what I can, when I can.

I am thankful my ability to walk WILL come back, it just isn't as fast as I'd like. 

I am thankful for my own bed.

I am thankful for a mom who (among hundreds of other things) stays with me in the hospital.

I am thankful for funny TV shows.

I am thankful for online shopping ;).

I am thankful (understatement) that things have gone so well.

I am thankful for the opportunity to complete classes online.

I am thankful for hair that will grow back (and in the meantime...not having to shave!).

I am thankful for clean sheets.

I am thankful for cooler temperatures.

I am thankful for good days.

I am thankful one day this will all be a distant memory.

I am thankful for new days.

I am thankful that depsite all my bad days, I can usually come back and realize how lucky I am.

A bit premature for Thanksgiving, but I wanted to do a follow up to my last post. I know it may have been hard to read, so I just wanted to remind everyone that life is good and so am I. Do I still miss those things? Every damn day. But I don't spend everyday focusing on those things, or I try not to. I think my funk is lifting slowly. Some days I just have to let my feelings out, and sometimes I do that by writing. 

My mom and I had a long talk before bed the other night about all the things I've been thinking about. I felt better after talking. I had been keeping a lot in. I am sure I will discuss those things more upcoming. I will say, thinking of life when treatment ends is terrifying. I cannot wait, but figuring out how to put the pieces of my life back together is scary. I want normal more than anything, but I don't even know what normal will look like now. I have some time to figure it out, and I know that I will.

It has been rainy and cloudy here for almost a week with no end in site. I am OVER it. I like a cloudy day here and there, but this is too much. I need the rain to leave, but the cool temps to stay!! 

My hair started coming out again. While not unexpected and not as hard, it is still never fun to see your pillow covered with your hair. It didn't all come out last time so I'll be curious to see what happens now. I'm just hoping my eyebrows and eyelashes hold on as long as possible! I am happy this is the last time I will deal with this and look forward to it coming back for good!

I woke up the other day with a bad headcold. I am hoping it is on its way out now. I hate colds so much! Plus now we have to be so careful and make sure it doesn't cause a fever. On that note, it is that time of year where I should throw this out there. If you have been sick or been around someone who was, please wait till you are better to come see me! Chemo makes my counts drop and I really need to avoid getting sick as much as possible so things stay on schedule. Thank you in advance :). 

I don't really have anything exciting to say. I am hoping to leave the house tomorrow for the first time in weeks, even if it is just to get some Starbucks!! I've been eating as much as I can (which is not as much as my mom would like) since the methotrexate messes with my tastebuds. I am really praying my levels drop quickly so we can get a few days at home before going back. I am going to miss Stanley!! 

Thanks for all the love and prayers!! Ready to cross these next two treatments off my list!

I Miss

Friday, September 25, 2015

In no particular order:

I miss being able to get myself out of bed in the morning and go downstairs and get breakfast.

I miss being able to get dressed and get in my car and go to stores.

I miss Target.

I miss being able to go into the kitchen to get myself food.

I miss being able to walk, anywhere.

I miss being able to get up and down the stairs easily.

I miss having hair with any length.

I miss being able to take a normal shower.

I miss not having to worry about simple colds and low grade fevers.

I miss not having to go spend however many days in the hospital.

I miss not being exhausted (and I don't mean sleepy exhausted...I mean physically).

I miss not waking up in the middle of the night due to either leg pain or not being able to move it.

I miss not having the giant scar down the middle of my leg.

I miss being able to put the dogs out.

I miss my old appetite and tastebuds.

I miss shopping (of all kinds...especially grocery).

I miss being at school on my own.

I miss my friends. 

I miss our Friday night yogurt or Chipotle traditions.

I miss babysitting.

I miss not being nauseous 3/4 of the time.

I miss not having countless doctors appointments.

I miss not having a port in my chest.

I miss driving.

I miss being able to be helpful and independent. 

I miss my clothes fitting the way they should.

I miss it not being painful to brush my teeth.

I miss not having to use a walker or crutches or a wheelchair just to do simple daily tasks or go to a store.

I miss my old life.

I don't really mean this post to be depressing, but just honest. I've had an emtionally rough few days (I'm sure the gray, rainy weather doesn't help), and I've (stupidly) spent a lot of time thinking of all this. I've gotten some e-mails about school stuff and I think the season change in general is throwing me off. I just realized I missed the 6 month mark since diagnosis, which seems significant, but I was probably too nauseous to realize at the time. Half a year...I never knew time could pass so slowly yet so fast at the same time. I know I will get a lot of it back, but that thought currently doesn't help me. This too shall pass, I know. Each day is one day closer to the end, which does mean something.

Not to say there hasn't been any good these last few days, because there has. There always is and please don't think for a second I ever forget that. Like I have said before, I am good 99% of the time but I do have my 1% days. 

I have a doctors appointment and PT Wednesday then go into the hospital Thursday for my next round of chemo. Can't say I am looking forward to it, but hoping it is short lived and will be happy to cross it off. 

Thanks for all the love and prayers. Cancer sucks. I hope everyone has a great weekend!

Just for a smile to this post, here is Stanley in his new raincoat. He tolerates it...but he did cry in the rain before he had it!


Tuesday, September 22, 2015

These last few days have been rough.

I don't feel brave. Or strong. Or whatever other adjectives people have used to describe me these past months. While I appreciate the compliments, truth is, if you had seen me last night or a few days ago you may not have said those things.

Quite frankly, what I do feel is tired. I feel tired of being tired. I feel tired of the mouth pain and the nausea. I feel tired of not being able to walk easily and the leg pain. I am tired of not being able to drive. I am tired of the hassle that is going up and down the stairs. I'm so tired of it all. 

Last night was my first breakdown in awhile actually. My mouth pain just got so overwhelmingly (is that even a word?) awful and I broke down. I am either stuck in my room or downstairs on the couch, simply because I don't feel like putting the effort into the stairs. It is just hard. I am reallly struggling with why everyone else gets to be at school doing fun fall things while I am stuck here. It just isn't fair and it sucks, so I cried.

You know those people who say they wouldn't change how this went no matter how hard because of what it taught them? I call BS on those people. If someone had given me the choice of going through this or just not learning whatever I am supposed to be learning, I would not have picked this. I highly doubt next year at this time (when I pray this is all a distant memory), I will look back and be thankful for this experience. I will be thankful it will be done, but that's about it. Maybe I will feel differently, but currently I cannot imagine so. 

Honestly, this past round of chemo was not too terrible in the scheme of chemo. I had what I would consider mild nausea and I can count on one hand the number of times I got sick. I don't know if my body is just used to it or if we did a good job of staying on my medicine, whatever it was, I am grateful.

I did spike a little fever on Thursday night. It got to 100.8 and we are supposed to call if it is over 100.4. I was so scared they were gonna send me to the hospital, but thankfully my second favorite doctor was on call and we were instructed to start me on the antibiotic we keep at home and reevaluate in the morning. It was kind of up and down Friday, but never got any higher, so thankfully I was able to stay home. Who knows what it was. My brother had had a fever a few days before with a stomach thing, so that could have been it (even though we stayed separated!). I was just extremely grateful to not have to go into the hospital.

The mouth pain is the worst. While I don't have actual sores this round, I do have EXTREMELY bad mouth pain. My throat, gums, and tongue hurt so bad. It of course makes eating a huge struggle, and forget brushing my teeth. It is complete misery. It is slowly getting better, but I need it to GO AWAY. It is so frustrating to want to eat and not be able to. I cannot put how awful it is into words.

I am really struggling with having to go through all this so many more times. I know I am extremely lucky that this will end when it does and is a lot less than some people go through, but it still sucks. I hate chemo. There has just got to be a better way. Someone please figure it out.

On another note kind of, September is National Childhood Cancer Awareness Month. I don't know how many of you have seen this, so I have to give it a shoutout here (should probably have its own post, but I am not feeling  super inspired to write lately). Anyway, I am not pediatric, since I am over 18, but osteosarcoma is classified as a childhood cancer. Sarcoma in general is often the last to get research since it is so "rare" (BS if I can get it how "rare" is it?). Some of the facts are simply staggering. 
-The American Cancer Society gives one cent of every dollar raised to pediatric cancer research. While they do great things for other cancers, what about kids?? I honestly believe that a cure for one cancer would lead to cures for all kinds of cancers.
-7 kids a day die from cancer. 36 are diagnosed everyday.
-In the past 20 years only 2 new drugs have been approved for use in kids, both dealing with Leukima. In 2012 alone, 23 were approved for adults.
-Some childhood cancers are terminal simply upon diagnosis. 
(facts via via google)

I don't share these facts to make you sad, but something needs to change. To know that there are kids  and babies who have suffered in the way I have or worse breaks my heart into pieces. Can you imagine not even getting to be a kid? That is just so wrong. Little kids don't even know how to form how they feel and probably don't have the mental capacity to understand what is happening. They need help too. 

I feel like the young adult category is kind of brushed over in the cancer world. Not that there aren't great resources out there, but it is kind of an awkward spot to be in. I sit in the chemo infusion room and am the youngest person typically by a good 15-20 years. My ultimate dream would be to build a young adult outpatient treatment center. I imagine rooms with tvs, games, maybe even a coffee bar. I mean some people (like me) are there for 8 hours at a time. If I can figure out how to do this, I will. 

So that's kind of an update from here. Just trying to eat and stay out of the dark hole I sometimes crawl into. I know many of you may be wondering if I have reached out to any of the resources available. The answer is no. One of my doctors gave my number to a girl who went through what I am going through a few months ago. She called me, but I never called her back. For some reason, I feel like I need to forge forward by myself. I am sure it would be helpful, and I am certainly not against ever reaching out, but I haven't been able to bring myself to yet. 

I am typing this post on my iPad, which I ordered a keyboard for, so I honestly can't tell how long this post is, so I apologize if it is overly long. I also apologize for any typos...for some reason I am finding this keyboard extremely hard to type on.

I have PT tomorrow and I think next week then will be admitted to the hospital for Methotrexate I think next Thursday. I am on a Thursday/Friday schedule now, which kinda stinks, but I am so ready to be DONE I dont care when it happens.

I know this wasn't my most upbeat post, but such is reality sometimes. It is all still good, and I know that, but I still have my moments. I have never been one to rush time by, but if someone could knock mee out now till I finish, I would be a happy camper.

I hope you are all having lovely weeks! If nothing else One Direction released album info and a new song so that kind of made up for yesterday :). 


Friday, September 4, 2015

Yes, it is another update in less than a week :)!

I had a very busy week! From going to doing absolutely nothing last week to having something everyday this week was quite an adjustment. Add that into the fact that most of my things this week were in the morning and I am not a morning person and you understand why I am so tired!

First off was the appointment with my surgeon, Dr. P. I am sure most of you have heard by now, but the meeting went fabulous. Since I am feeling tired and lazy (see above) I will post here what I posted on Facebook incase you haven't heard:
 "So as miserable as chemo is, it is all worth it because it is working! I met with my surgeon today and got my pathology report. They look for the tumor to be 90% dead and mine came back 87.2%! My surgeon said because it was so close it could just be statistical error or something like that! Because of this, I will most likely remain on my same chemo regime (which is good!). The tumor in the bone was 100% killed and the part outside was 87% killed and he got clear margins so it all was removed! Sorry this is so long just have to share the great news! I have an appointment with the chemo doctor Thursday and should start back next week or the following! Thanks so so much for all the love and prayers!"
As you can see, all went extremely well. I didn't realize how relieved I felt to have the news till I got it. I am so incredibly thankful that things are going so well. I don't take it for granted for a second. He also said that my incision was healing well and was surprised at my range of mobility for not having started PT yet. He uncovered the incision and it is actually a lot thinner than I expected. Once the steri-strips fall off it will look a lot less gross. I am free to keep it uncovered, but feel more comfortable when it is. I also got him to sign a paper so I can get a handicap pass. After being out these last few days, I realize how necessary it is for the time being, but I can't say I am also not excited to have it so parking is easier haha!

I was supposed to go to PT that afternoon, but ended up not feeling so good, so we cancelled and I slept.

Tuesday I ended up at my regular doctor because I had a bladder infection. I thought I had one last week so my surgeon called in an anti-biotic, but it never completely went away. I told my mom it was funny that I have all these doctors, but we no longer know what to do for a simple UTI. Anyway, I got the prescription for that and hopefully it clears up. (clearly my boundaries have changed because I have no trouble posting about my bladder for everyone to read).

Wednesday was my first day of PT. My PT guy is really nice and gentle, which is what I need. The place is quiet and calm. I don't need some crazy gym person yelling at me to lift up my leg! He gave me several exercises to do at home and did a lot of stretching. It did not hurt as bad as I expected, it actually felt kind of good. I knew it was going to be a lot of work to get back to myself, but I did not realize how much. We learned we are working to build up my quad muscle. It is completely weak. I can see how his exercises will help and I look forward to seeing progress! He also taught me how to properly use my crutches so I have been using them for short outings out into the world. My mom and I ran into CVS after PT which was my first time in public since before my surgery! My crutches were good then, but I can see them being extremely tiring for longer errands. I was extremely sore after PT so I came home and napped (that is a common occurrence these days).

Thursday I met with my chemo doctor, Dr. B. He too was thrilled with the results of the pathology and surgery. He said it was the best we could hope for and we are trucking a long. All good news! I am set to begin chemo again next Thursday and Friday. It is the same regime as before, but one of the chemo drugs gets dropped later in the course of treatment. I have about 14 weeks of treatment left which has me finishing up around the middle of December. I pray all things stick to schedule so that is what happens! When he was showing us the schedule and he pointed to the week and said "that is where you finish" I think I almost cried! The light is truly at the end of the tunnel and I am so incredibly thankful!

Now, as excited as I am to get things moving so they can end, I cannot say I am looking forward to chemo. It sucks and I think I am forgetting how much. I just pray that the mouth sores STAY AWAY. I am pretty terrified that they will happen again. Nausea, I can handle, but mouth sores are actually hell on Earth. I also really need to put some weight on before I start again Thursday. I lost a lot of weight the first two rounds for many reasons. Chemo messes with your tastebuds, you are so nauseous, and then of course the mouth sores. I really do try to eat when I can, but sometimes it is hard. I simply cannot afford to lose anymore weight though, so I will have to try even harder. It doesn't help that when I do wanna eat, I want cucumbers haha! My one chance to binge eat junk and I don't want it! I am also kinda bummed my hair is gonna come out again. Although it is not nearly as much and I knew it was gonna happen, it is pretty sad to know I have come all this way! At least now I know what to expect when it does come back for good!

Then today, Friday, I had PT again and went to the grocery store to try and get some food I feel like eating. I have been to Publix 39485 times, but I never expected to be there in a wheelchair! You should have seen my mom and I trying to manage the baskets and wheelchair in the store! We made it though, somehow!

I am super excited I don't have anywhere to be this weekend. I will have PT Tuesday, but thats it until Thursday. I plan on seeing some friends that are home and snuggling with my dogs! I am going to try to do some shopping, since I am having withdraws (that's how my mom says she knows I am feeling better...when I say I need to go shopping!). I hear some of the stores have fall stuff out and I need to indulge :). I also have a few restaurants I need to get to before my tastebuds go away!

I am still in a lot of pain from surgery. I still take pain meds, although I am trying to wean off as much as I can. I really don't mean to complain here because I know how lucky I am and how much worse things could be, but hear me out. I am NEVER comfortable. I am not comfortable standing or sitting or laying down. I can get my leg in a comfy position for like 5 minutes and then it needs to be moved. That may not sound that bad except for the fact that I cannot move my leg by myself. Sleeping is next to impossible. I literally wake up at least 4 times a night either in pain or just because I am so uncomfortable. What I wouldn't give to be able to get a good night sleep. I get so frustrated when I am not comfy and I am tired. I have tried all kinds of pillow arrangements and positions and nothing lasts. It is starting to get really, really old. I just want to sleep! I am gonna try and hobble up the stairs this weekend to see if I can get into my is a big goal so I am not sure if we will get there!

Other than that, things are pretty good. Really good actually. Kind of weird to call life "good" at the moment. Sure it is not the good I would have wanted or expected, but it is good for what it is. Great actually. I know not everyone leaves their oncologist smiling, and that is something I think about constantly. I see stories all the time and they just break my heart. I am so, so grateful things are going so well. Really. Even in the worst of my pain and misery I try to remember that. I am also incredibly grateful to have so many people in my life who make me excited to share the good news with. I have gotten so many kind messages and gestures. I promise I am working on thank you notes, but please know I thank you all from the bottom of my heart for everything.

I think that is it from me! I hope everyone enjoys their long weekend! If only the temperatures would actually drop after Labor Day!

♡Hellen Keller? It's a Hellen Keller quote, she can't talk, see, or hear, how did she say that?: