Flashbacks

On a site I frequent, someone asked a question that really made me sit back and think about my life and how much I’ve accomplished and endured in 24 short years. It made me think back to high school and where I thought I would be now. What I dreamed then and where I am are very different and at the same time, strangely similar.

As a high school senior, I envisioned myself as an aspiring journalist doing a 2 year stint in the Peace Corps at age 24. I imagined I’d be going helping others, going on extraordinary adventures, and discovering my true self all at once.

Instead, I find myself a wife, going through adventures in mommy-hood while battling cancer and pursuing my new-found dream of becoming a Historian. While I think my original plans were great, I believe that my life thus far has provided me with all I’ve dreamed of. I’ve been on adventures…perhaps not while traveling around the world, but still, I’ve had adventures that have led to me becoming a strong, kind-hearted, and brave individual. Life may not lead us down the path we originally planned on taking, but somehow I think we all end up at the same destination in the end.

Muslims and Nazis?

Lately, this fiasco about the Mosque being built near ground zero has gotten quite a bit out of hand. I’ve heard some absolutely sickening comparisons being made about the Mosque, such as “it’s like building a Nazi shrine upon Auschwitz” or like a “Japanese Imperialist Community Center” being built at Pearl Harbor.” Both of these comparisons are not only ridiculous, but also completely ignorant and inaccurate.

I promise I’ll attempt to keep it short and sweet.

The Nazi Party was/is an extremist political regime that held no upstanding moral values AT ALL. No one that was/is a true member and follower of the Nazi party was/is a decent person. Sure, the Nazi’s proclaimed that what they did was in the name of God, but in reality, they were not and are not anything even remotely close to a religion.

Building an Imperialist Japanese Heritage Center would also be the similar to the Nazi example, because it is political centered nationalism. It is not Japanese nationalism, it is a politically controlled group of nationalists that hold very different ideals and values from Japanese cultural nationalism.

Islam is a religion, not a political stance or party. It possesses good qualities and traits, that promote love and respect, but as any other religion it houses a number extremists (just think about  Christianity and the Westboro Baptist Church). It is very much unlike the extremists political parties and nationalist ideals, because it is a religion and the majority that follow the religion do not approve of what happened on 9/11 or any form of terrorism, whereas the majority of individuals, if not all, of the other two groups do condone the atrocities done in their name.

There is no way they are the same at all. The comparison is the result of extreme right winged fear mongering at its worst.

Another birthday

Alas, another birthday has come and gone. I’m now 24 years old. I’ll admit, I was very enthusiastic about this year’s big day for me…mainly because I feared that it wouldn’t happen earlier in the year. Brandon’s parents had Callie for Saturday and Sunday night, so I did some celebrating. Saturday night I went out to eat with Melissa and Kristina and then we ventured to Rising Star, an awesomely fun live karaoke bar, and met up with Sherry. I believe the employees there know me well now, due to my mobility issues. Afterall, it’s not everyday you get a 20 something year old wandering in with a sit and stand.

On Sunday, Brandon and I slept in late and went to dinner at the Grand Floridian Cafe. We ate during a monster storm and the power flickered on and off. After that, we headed to Beach Club to see Callie and my in-laws, and then went to Magic Kingdom for some fireworks and Hall of Presidents. Ah, the birthday celebrations of a history buff. Brandon also purchased some “Pink Sugar” lotion from Basin, which smells fantastic, I highly recommend it… if you can get past the jaw dropping price.

All in all, I had a great birthday. I’ve definitely got some updating to do concerning my physical therapy and health, but it’s late and I’m tired. So I bid you adieu!

Recent Wanderings

Lazy day at  Epcot…

Nerves

I’ve been progressing slowly since my surgery. I can now get around a bit easier but still mainly stick to the bed and recliner. My knee feels so strange and my foot is having stabbing pains like it did before when I had drop foot, I hope that goes away soon. I’ve been looking for someone with a hinged knee replacement but am having a hard time finding someone…I can actually feel that it is two pieces and this kind of freaks me out. I’m still afraid of never walking normally again…with drop foot and a knee/tibia replacement it just seems very unlikely.

I have a nurse that comes daily to give me my shots and to change my skin graft dressing. Physical therapy won’t begin until after 6 weeks because I’m not even allowed to bend my knee right now, it has to stay in the stabilizer.

I’m getting a bit nervous about my appointment with my orthopedic oncologist on May 6th. I find out that day if my tumor had a good necrosis percentage. If over 90% was dead then I continue on with my same chemo regiment until September. If not…they try and add two more drugs and it lasts who knows how long. I’m also nervous about having metastases pop up now that the main tumor is gone. Nerves, nerves, nerves!

Other than all of the recovery, I am enjoying my mini break from chemo even though I’m stuck at home in a stabilizer. I dread going back but know it’s necessary. Right now we’re planning Callie’s birthday party for May 29th since I’ll likely be in the hospital on her real birthday or recovering from my “bad” chemo. She wants a Mickey Mouse Clubhouse theme, she seems really excited about it. I can’t believe she’s turning 3 already!

Hopefully my insurance company okays a wheelchair with an outstretched leg for me so I can get out of the house sometime in the next few weeks! I hate that Callie is stuck in the house a lot because I am…it makes me feel guilty.

I’ve included some pictures of my leg, it’s not for those with a weak stomach, so please don’t scroll down any further if you are easily grossed out!

Now that I’ve grossed you out, I hope everyone has a great weekend!

Surgery Update

My surgery was Wednesday. I don’t actually remember much from that day, I was knocked out pretty much all day. Surgery seemed to go well, they ended up using a bone prosthesis instead of a metal rod for my tibia and my knee replacement also seemed to go well. I also had a skin graft done, so my upper thigh feels like I have major rug burn since they took the skin from there. Yesterday my wound vac (the thing that sucks the gross stuff out of my skin graft area) had to be changed and I saw my skin graft. I wanted to cry, it looks disgusting. They had to put it through a mesh thing prior to putting it on and it just looks so gross. I’m hoping eventually it will look semi normal or I’ll most definitely be wearing pants a lot. Another downside is that i will probably have drop foot forever now. The tumor engulfed my perioneal (nott sure of how to spell it!) nerve, which is what controls your foot, so I’ll be stuck in a brace forever. My surgeon said I may get up to 30% of it back but that’s all. Luckily, I had foot drop after my August surgery so I know how to work the brace and everything. It’s also in my favor that my father in law is a podiatrist so I can get the latest and most advanced foot braces.

As for my leg, I can’t move it for 6 weeks, it has to remain straight. I can get up as long as I have my stabilizer on. Right now I’ve only gone from the bed to the chair because I still have an epidural in for pain, so even my “good” leg is weak. The most amusing thing was Thursday night I could not get up, we tried for 30 minutes. So, my nurses had to put this thing underneth me to lift me into bed, it was kind of like a swing. Actually, picture in your mind the thing they use to move dolphins into water…that’s it! It was pretty funny. I also had to have a blood transfusion, which I did not have a reaction to this time!

I’ve had a 102 fever since my surgery that won’t go away. Blood cultures take 48-72 hours to grow so I won’t know if I have an infection until Sunday or Monday…I really, really hope not. Somehow I always get the rare side effects.

I won’t find out how much of the tumor died for 2 weeks…so it’s a waiting game. We’re hoping for 90% or over, that is considered a success! If not…even more chemo and two more drugs. If it is 90 or over, then chemo until September!

That’s about all for now. I should go home on Monday if my fever goes away and I don’t have an infection…so I’m thinking happy thoughts! I may be in pain but at least I get a small break from chemo. Think happy thoughts for me!

Spirituality, Life, and Cancer

When I first received my cancer diagnosis many people around me asked me if I was angry or if I placed blame upon anyone or anything in particular, including God. Now, I have never considered myself a religious person. I grew up surrounded by mainly “Christian” ideals but nothing ever really stuck. Upon entering college, I became interested in the subject of anthropology and actually received my first BA degree in it. I found anthropology fascinating because it was a way for me to religious ideals believed throughout the world as well as discover the scientific aspect of the evolution of human life. Now, I proudly consider myself a daughter of many religious beliefs and scientific ideals. The thought of blaming someone or something for my cancer did not really compute with my system. I do not acknowledge or dispel the belief of a God like being but, if there were one, why in the world would they want to inflict such pain upon others? I asked others this and they asked me why they would not stop it? I did not have an answer and still do not. I’m sure people who are strong in their religious faiths of various beliefs can concoct an idea but, for me, a person of mixed spirituality and science, I have none.

All that I do know is that I’m not angry. Yes, I am upset and frustrated but not deeply angry. I believe that the key to remaining happy is being positive. I also believe that in life, some things have a reason or a purpose. I’m not sure what purpose me having cancer is exactly yet but, I do know that thus far, it has made me appreciate life’s small beauties in such an amazing way. Don’t misunderstand, I was indeed a very happy person prior to my diagnosis but now, I just feel as if I see the world differently. I look around and see love, friendship, and beauty rather than anger, hatred, and letdowns. I enjoy sitting out on my patio watching the birds swim by in the lake and feeling the cool air brush against my skin while hearing my daughter tell “Look mama, a duck!”.

I’m not really sure where I’m going with all of this but, I think the main point that I am trying to get across is that a person does not have to be significantly religious or anything to have faith that things will work out. I have many friends that are religious and find peace, happiness, and solstice in that but, people who are agnostic, atheist, or simply unlabeled can achieve this same state too. if you look deep inside yourself and look within your loved ones, you’ll find it.

Another Round and Mini Meltdowns

Time for an update. I had chemotherapy in-patient again from Saturday-Wednesday. This time I got a lovely dose of Methotrexate, which wasn’t half as bad as the Adriamycian and Cisplatin combo I had last time. I was actually awake and coherent during my stay, which was probably bad because I was bored out of my mind for 5 days. I tried to occupy my time with reading, writing, and wedding planning. I go back in tomorrow for yet another Saturday-Wednesday stay and then again next Saturday-Tuesday. Having only two days home is a bit depressing. You never know how much you miss your own bed, being able to sit on your porch, or just sit on your own couch until you’re stuck in the same white walled room with beeping machines hooked up to you for days on end. They even let me out early, my levels were .1 over but I was begging them at that point! I told them to give me more stuff to pee (lacix, I believe it’s called?) so I could flush that folic acid out of my system! I was up every 20 minutes tripping over the power cord, my poor nurse was having a nervous breakdown from me!

I’ve reached the point where I’m having mini meltdowns. Callie talked to me on the phone in the hospital and cried and asked when I’d be home. It broke my heart. She’s far too young to understand the severity of the situation, which in a way, I’m thankful for. But, at the same time, it hurts to know that she’s upset when I’m not here.

Today I attempted making grilled cheese and had a mini freak out because I could hardly stand up long enough to do it. I was such an active person before all of this happened. I just sat on the floor and cried because I was just so tired. Poor Brandon and Callie were bewildered as to why I was on the floor crying, swearing under my breathe about grilled cheese. I’m glad they put up with me, I’d certainly think I was insane. At least I didn’t burn the sandwich.

I think that the realization that this is my life until at least September has really hit me. And after April, I’ll be in physical therapy from my knee replacement and tibia replacement, which is like a double whammy with chemo. Everyone thus far has commended me on my spirit and positive outlook…I’m trying not to lose it but, it’s just difficult when you literally feel ill almost 24 hours a day.

There is also the dealing with “looking like an alien” as I call it. I was upset when my hair fell out, okay with my leg hair no longer growing (one nice perk!), but not so okay with my eyebrows and eyelashes falling out. I’m ordering some “real human hair” (I hope!) eyebrows for the wedding and will don some fake eyelashes. Other than that, I wear my glasses around a lot so dirt doesn’t get into my eyes. 😦

At least this hospital stay I’ll have my wedding invitations to work on. My oncologist okayed the date since it will be on my 3 week break between my last pre-surgery Methotrexate chemo and my surgery. So, April 10th is the day!

Something blue?

I go in for my next dose of chemo tomorrow, that’s of course if they call on time. Last time they had me waiting around for two days and then they called me in. Moffitt is a very, very busy cancer center. This time I’m having Methotrexate. I should be in the hospital about 3 or 4 days, hopefully no more than that. I then get a week off, do it again, another week off and then a dose of the dreaded “red devil” Adriamycian/Doxirubician and the Cisplatin. I can only hope that I get no more fluid build-up around my heart from the Adriamycian. My chest hurt so badly the last time I had it I thought I was having a heart attack. I now have to have an echocardiogram after each cycle to make sure it doesn’t get any worse.

In other news, Brandon and I are trying to throw together a last minute wedding. Truth is, I want to be able to walk down the aisle. If we wait until after my limb salvage surgery, we’ll have to wait until sometime next year for me to be walking again. Also, in a way we’re doing it “just in case” anything happens. I’m very positive I’ll get through this but, you never know what could happen. We’ve been wanting to get married for years but, finances were always short and health insurance was an issue. Since I turned 23 last year and could no longer be on my dad’s insurance, I had to switch over to COBRA. So, it doesn’t matter if we’re married or not now. Finally, after 5 years I’ll be able to say Brandon is my husband and not fiance!

Our family has really pulled through, we are very blessed to have them. Everyone is chipping in for the wedding and it makes me want to cry. They have already done so much for us and now want to ensure that I have a beautiful wedding. I am very, very lucky.

I’m excited but also worried about doing it last minute. We’re only inviting family and close friends, so we know almost everyone will be able to make it. I’m planning on doing it April 10 or 11, my white blood cell counts should be higher then, since I’ll be about 2 weeks between chemo treatments.

I went dress shopping today and fell in love with this dress. I had a hard time finding one because so many are strapless now. I needed something that would cover my port in my chest. I was also lucky enough to find a beautiful headband and veil that fit perfectly on my wig. Anyway, here is a link to the dress I got. It’s vintage looking, lace, and champagne colored. David’s Bridal is being so nice in working with my on my alterations since I have so little time and I’m sick a lot. I’m thankful they understand.

So, things are well. Wish me luck tomorrow. I’m hoping the Methotrexate doesn’t have as harsh of side effects as the Adriamycian and Cisplatin do!

” Laugh as much as you breathe and love as long as you live. ” – Author Unknown

❤

The Shaving

Yesterday was a bit difficult for me. I knew this day was coming and actually overdue since I’d been putting it off. I got my hair cut into a short bob last week to make the transformation less dramatic. Still, even with cutting it, it was a bit heart breaking.

This week my hair started to fall out, a lot. I’ve had to clean off the bed every morning, the shower drain has been getting clogged, and my hair thinned out so much I had to don my wig the other day when we went out. My head was actually hurting from my hair falling out, it was so sensitive I couldn’t even touch it. I’ve been wearing scarves and hats so my hair wasn’t falling out all over the house but yesterday I decided enough was enough and I finally got it shaved. My head feels very strange and cold. I don’t quite feel comfortable enough to go without wearing a hat, scarf, or my wig out in public but I’m going to try and go au-natural in the house…as long as Brandon doesn’t freak out. 🙂

Callie and my mom were with me when I got my head shaved. Callie got a bit upset, asking if we could put it back on, but I think she’ll get used to it after a while. She was so worried about the lady cleaning up all of my hair and kept asking “Will they clean up the mess? It’s messy!”. She cracks me up.

Anyways, I’ll be brave and post a picture. Being bald is nothing to be ashamed of. I know it’s cliche but beauty is more than skin deep. On the upside, it takes me much less time to get ready now that I only have to do my makeup. Also, not shaving my legs or armpits is an added bonus. I think in a way this experience is just opening up my eyes to the fact that society puts so much emphasis on a woman’s beauty or a man’s good looks and tries to fit everything into such a small sliver of what’s acceptable. I thought I would care if people stared at my bald head or my head scarves but honestly, I don’t. I’m still me and I still feel like me, that’s all that matters.

In other news, I discovered that my chest pain is due to pericardial effusion, or fluid around my heart. Right now, it’s a small amount so they are just going to monitor it after every Adriamycian cycle I receive. Of course, I have to get one of the “rare” side effects of the chemo!

Other than that, I’m doing well. Today I felt very sick but hopefully tomorrow is a better day!

“Laugh as much as you breathe and love as long as you live.” – Author Unknown