August 24, 2010

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.



May 1, 2010

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!

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.

Something blue?

February 19, 2010

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

I recently came across this blog again and looked back on my January post “Cancer lurking in the shadows”, what an appropriate title and what irony. I’ve had cancer all along.

For those of you just tuning in that haven’t found out from another source I was diagnosed with a rare form of bone cancer, called telangiectatic osteosarcoma, on December 16th. It’s very likely that I’ve been misdiagnosed since January. The pathologist misinterpreted the results from my January surgery to remove the bone tumor and from the August surgery. On my latest surgery on December 2nd, they had no idea what it was, so they sent it away to Mayo Clinic and wallla! a diagnosis of telangiectatic osteosarcoma. I’ve had a PET/CT scan and a CT of my lungs done but won’t know the results until Monday. Anticipation, anticipation. Well, a more accurate reading of my feelings would be fear and hope with anticipation that everything came out clear.

I’ve been doing so much research on this disease it feels like my head is spinning. I’ve found sarcoma support groups but have been unable to find another individual who has suffered from telangiectatic osteosarcoma. Even my doctors are unaware of anyone. I’ve always been rather unique and enjoyed it but, I think this time I’d prefer to be mainstream. If you have to have cancer you certainly don’t want a rare one and on top of that a rare one that hardly anyone has ever had. It’s a bit discouraging and I feel rather alone.

I find it odd that people don’t start rushing to get things done until they find out they may die. We’re dying everyday yet we put off things and wait until we’re more prepared and better equipped to do them. Well, this news has really put things into perspective for me. I may only be 23 but, my life is now and well, you never know.

My family and friends say I am handling this brilliantly. The truth is, I don’t know how to handle it. I’ve always been one to make jokes, poke fun, and try to be cheery…which is how I’m attempting to handle this. Displaying emotions other than happiness or displeasure has never been a strong suit of mine. I prefer to keep the emotions that make you the most vulnerable, sadness, fear, heated anger all under control and well disguised. Usually, this isn’t a problem. Now, I’m not sure of who I am anymore. I’ve found myself crying at night, hiding in the bathroom or silently sobbing into my pillow. I smile and joke around my friends and family, because they’re there for me and make me remember that I’m still me, they remind me that I’m still funny, witty, loving, stubborn, sarcastic Jamie. But, when I’m alone, I find myself lost and fearful. It’s funny how one word can make you so frightened and unsure of yourself yet, so hopeful at the same time.

I’ve neglected this journal but, I’m going to keep it updated throughout my journey from now on.

Happy New Year to everyone.