My Cancer Journey

A friend posted this prayer on a pinterest board today and it really spoke to me.  I think in this crazy, messed up world we live in we allow our hearts and minds to be filled with knots. Even examining my own life, I realize that I have "can nots" "am nots" and "have nots" that do hold me back. There is a fine line between acknowledging your limitations or weaknesses and them hinder you.  

Tomorrow I celebrate my 24th birthday, and also 2 years of my cancer being in remission.  In the midst of all of the chaos that is currently my life, I am still taking the time to step back and appreciate this.  I definitely don't feel like I'm 24 years old--where has time gone?  I am so thankful to be celebrating another birthday, and to be able to say that I'm still cancer free!  I am blessed in so many ways that I can't even begin to list them. My family, friends, classmates, professors, oncologists, surgeons and therapists played important roles in my journey, and I am so thankful for this. I have been asked many times over the course of my life, "If you could go back in time and change something about your life, would you?"  I usually didn't know how to respond to this question, because maybe it would be cool to go back and undo bad decisions or bad experiences. I've been thinking about this a lot lately, and now I know how...

People often say that you should live life without regrets; I think people who don't have regrets have a unique view on life.  No regrets. Perhaps the only way to live without regret is to accept the things that can't be changed and to live your life with intention. Every decision that we make has consequences and they can be positive or they can be negative.  If we make those decisions with the best intentions, then how likely are we to make the wrong decisions, ones that we might regret?  I’m trying to be thankful for everything good that happens, and for everything bad that does not; slowly I am learning to be thankful for what I learn from the bad things that do happen. For everyone, there are moments in life that we never forget, those defining moments in our lives that have profound impact on us. These moments can be joyful or sad, they can be triumphs and they can be struggles. Each person has their own moments and each person is impacted differently by these ...

February 13, 2012: The entry on March 22nd was the last journal entry I made. Here is a general summary of what happened next... I went off the pain medications after 2 weeks of being home. I went cold turkey, which was a bad idea, but no one instructed me to ween myself off of the pain medications. I think my body went into a little bit of withdrawal, but I worked through it! I spent the next several months recovering from all of the side effects. I couldn't believe how long it took me to recover. And then in December of 2010 I had to have more surgery on my jaw. An MRI scan came back with some unusual spots on it, and I had been having signs of infection for a few months before that.  The antibiotics were not helping, so they decided they needed to go back in. We later found out, after the procedure, that the screws holding the metal plate and my jaw together had come loose. Scary! Glad they fixed it. The recovery from that procedure was much faster, and yes it did req...

March 22, 2010: I am done. Finally, I am done. My birthday was yesterday. Happy 22nd Birthday to me! Not exactly how I imagined my birthday, but at least I am alive to celebrate many more birthdays.  I spent my birthday in bed. My parents let me come home after my last treatment and just sleep the entire day. They are still on my case about eating, or should I say drinking my meals.   I still don’t really have an appetite, and my ability to taste hasn’t come back. I still have the sores in my mouth, so I’m eating liquids for now. I’m still on the weight gain shakes. These are ridiculously unhealthy I think. You mix the powder with 8 ounces of whole milk; total number of calories in one 8 ounce glass is 600. I’m supposed to be having at least 3 of these shakes a day if I want to maintain my weight. They would like me to gain weight. Haha, I have never been told to gain weight in my entire life. Never thought I’d hear that! My ability to talk is still kind of limited...

March 8, 2010: I feel like I’m dying. I know that I’m not, but if I were to imagine what slowly dying was like, this would probably be it. Is this an exaggeration? I don’t know. This is the worst experience I have ever had, and I hope the worst one I will ever have. I have been avoiding taking pain medications, but the pain has gotten worse. I started on hydrocodone, which has since been upgraded to oxycodone and I am also on pain patches.   I have lost a lot of weight, my clothes are loose and I look sick. It hurts to even drink water, much less drink these weight gain shakes the doctors have me on. I don’t want to get out of bed. I’m tired all the time. I can’t really find joy in much. My brother has come to visit me and I don’t even drag myself out of bed to see him. This seems selfish. He drove here to see me, and the least I could do is go downstairs to say hi. I don’t do it, though. I would prefer no visitors at this point. I would prefer to be alone.     ...

February 14, 2010: Happy Valentine’s Day. I started treatment on the 8 th . The first week of treatment has been going fairly well, but my doctors tell me that the side effects will get worse the more and more treatment I have. I’m trying to soak up this week of no side effects. I am eating whatever I want because I am told that I will probably be back on soft foods and liquids by week 3 or 4.   Ick. February 24, 2010: Radiation therapy seems like an inhumane treatment, and even treatment is too kind of a descriptor—torture might be a better term. The therapy itself is not tortuous; the side effects however are.   This makes sense I suppose, since they are exposing the human body to radiation. Yes, this stuff in large amounts can kill you. The therapy is an uncomfortable 10 minute session, which requires me to lie on a hard surface and have my entire face strapped down with a terribly uncomfortable mask. As treatment continues my face is starting to swell, probably som...

January 26, 2010: I haven’t written anything down for almost a month. The side effects of my chemotherapy seem to be getting worse the further along I get into treatment. I’m having trouble sleeping at night, so the doctor prescribed some sleeping pills for me. I am also experiencing more pain, but my swelling is going down dramatically.   I have officially been back on a solid food diet for 3 weeks! YAY! This is a big deal. Try having a liquid diet for over 2 months, then the appreciation for solid foods will come.   I have been spending more and more time in La Crosse; I want to live my life as normally as possible until I start radiation therapy.   I will begin my treatments the first week in February.   All in all chemotherapy has not been that bad. The occasional nausea, constant fatigue and the hair loss are the only major side effects. They have some good medications for the nausea, so I am controlling that fairly well.   My last chemo session ...

December 31, 2010: Today is the last day of this year. My journey is just beginning I know, but somehow a new year brings on thoughts of new beginnings. I’m going to try to make the most of everything. If I’ve learned anything in the last month it is this: we take too many things for granted. I am working on trying to appreciate everything. Life is short. This sounds cliché, but it is the truth. Young people get cancer and young people die. This is unfair, but it is the reality. I never thought I’d be 21 years old and have a cancer diagnosis. Never. Here I am though. I have been trying to stay positive. This is possibly because I don’t know how else to be. Eternally optimistic some might call it.  Some might think I"m crazy, and some have actually said that they're waiting for me to "have a complete break down". I don't think this is going to happen to be honest :) and I'm happy about that.  I am spending time in La Crosse, WI with my friends because it...

I came across this today and it made me smile. I think it is so true.

December 27, 2009: Slowly, or maybe not so slowly, my hair has been falling out. I wake up in the morning to find small clumps of hair on my pillow and when I’m in the shower washing my hair my hand is filled with clumps of hair. I have been clogging the shower drain with hair, and I find myself feeling angry every time I have to clean the drain out.   I want to cry, and maybe I should let myself. Then again, crying never fixed anything, so maybe it is best I just don’t. I’m not bald, but my hair is thinning. I am annoyed by my constant shedding of my hair, my beautiful hair. I am also noticing that the hair on my arms has disappeared, and I no longer have to shave my legs or my armpits. I am hoping I don’t lose my eyebrows or eye lashes; does this seem silly? I at least want to look somewhat normal I suppose. I have asked my dad to shave my head. This might seem crazy, but it is more depressing to have clumps of hair falling out than it will be to just have no hair. Today ...

December 26, 2009: It’s been a while since I’ve written anything down. I think this is for several reasons, but the biggest one being that I have been trying to occupy my time in other ways. I’ve been feeling kind of depressed lately, and I’m not really sure what to do about it.   At this point there are two things I am finding to be extremely frustrating.   The first is that I need help to do almost everything. I am a very independent person, so needing people to take care of me is something that I find frustrating. The second is that my hair is starting to fall out. I’m not bald, but my hair is definitely thinning. Oh the little things that I’ve taken for granted.   I have been receiving letters, cards, flowers, phone calls and text messages from supportive friends and family.   While I appreciate all of these things, sometimes they are just a reminder that I am sick and that I’m missing out on so much.   My classmates and professors have been a...

November 28, 2009: I spent my Thanksgiving feeling sorry for myself. Terrible thing to do, I know. I need to just pick myself up by my bootstraps and make the most of this….it is just much harder than I thought it would be. I have been on this ‘non-chewing’ diet only for a few weeks and I’m already sick of it. My Thanksgiving meal looked like baby food, and technically was the consistency of baby food. Everything had to go through the blender. And since the nutritionist told me I should try eating protein (aka meat) I did. Note to self and all other people: never eat turkey after it has gone through the blender. This looks disgusting and actually tastes terrible.   I guess at least I was able to be with my family and have a few good laughs. Some things do keep my spirits up, and I know things are going to get more difficult once chemotherapy starts so I should try to change my attitude now. December 7, 2009: Today I had a port-a-cath placed in my chest. This is done in order t...

November 20, 2009: (I spent 7 days in the hospital immediately post-surgery)    I have a feeding tube, a tracheostomy tube, drains for my neck and leg, a catheter, a pulse oximeter, an IV for pain medications and that’s all I can really remember right now. These pain medications are quite strong, and I find that I’m spending all of my time sleeping.   I have been so afraid to look into the mirror that I avoided it for the first several days, but finally looked. How depressing and kind of scary looking.   I didn't think I would look quite like this... There were lots of things that happened in the hospital, but most of it I don’t remember since I was on some very strong pain medications. I do remember this next event quite distinctly. I had a ‘trach’ tube which was annoying, since nurses had to come in and ‘clean’ it every 2 hours. To clean this, they put drops of saline solution down the tube, which in turn causes you to cough. Kind of like when you swall...

I believe that our past experiences are a big part of shaping who we will become. While the past doesn't define us, it certainly plays a role in who we are today. I have been through quite a bit in the last couple of years, and while I've documented it through journal I never really posted it to blog. I had requests for a blog in 2009, but I didn't end up getting around to posting one. So I'm posting the entries now, even if it is a little late. I feel like I have changed a lot over the last couple of years, and a big part of that change has come from my experience with cancer.  I was diagnosed with cancer in October of 2009. Some of you were with me every step of the way, some of you found out through the grapevine and some of you are just finding out the details for the first time by reading these entries. I'm probably going to post each entry separately and not all at once. I'll get the first couple of pages up tonight. Here's the first entry: S...

November 2, 2009: Today I met with the doctor who is going to perform my cancer surgery. He is an ENT (ear, nose and throat) doctor, also known as an otorhinolaryngologist.   He explained the procedure to me. I can honestly say that I am completely overwhelmed. They want to cut a section of my lower left jaw out and then replace it with another bone. The bone they want to use…is my fibula. Given my knowledge of anatomy I know that the fibula is a non-weight bearing bone in my lower leg that has several muscles which attach to it. This bone also makes up the ankle joint.   Can they really remove this bone? I am assuming yes since they have performed this procedure before, but this truly scares the hell out of me. I asked him a couple of questions but mostly just tried to process everything he was saying. I still haven’t processed it. They are scheduling my surgery for November 10 th .   Everything is happening so fast that I can’t even wrap my head around it. ...

October 26, 2009: I am nervous about this procedure, mainly just the bone marrow extraction. I looked up the procedure last night and the needles they use are quite large.   I didn’t write this down in my last entry, but I should probably write about the reason for the biopsy. The oncologist wants to have chromosomal testing done on the tissue because it may help them figure out a definite diagnosis. The chromosome testing can only be completed on live tissue samples, and the sample the dentist sent in was put in fixing solution (this kills the tissue essentially).   This biopsy shouldn’t be a big deal, since they are just going to take a little more tissue.   It should be an in-out procedure and I should be able to go back to La Crosse and resume class tomorrow.   October 26, 2009, Post biopsy entry:   I am beyond frustrated at this moment. I thought this procedure was going to be simple, but as it turns out I am now stuck at my parent’s house to recover. ...

October 16, 2009: Essentially today I have found out nothing new. I saw an oncologist today, who is recommending that I have several tests done. It sounds like will be back for appointments Monday and Tuesday next week. October 19, 2009: Today I had blood work done, along with multiple CT scans of my chest and abdomen.   I also saw the oncologist again so she could go over the test results. The day is a blur, but I’m exhausted and I just want this to be over. I want someone to tell me what is wrong with me, but the doctor says that more testing is necessary to figure out exactly what kind of cancer this is. October 20, 2009: Had to be up early this morning for more testing. My parents and I spent the night in a hotel last night. I don’t think any of us really slept all that well even though we are drained. Today I had another CT scan done, but of my head and neck this time. They used a contrast dye today, though I’m not really sure what that does.   The doctor said that...

October 9, 2009: If there was ever a day that I was on emotional overload, today was it. Today I got the phone call from my dentist. She received information from the hospital about the tissue sample and asked me to come into the office to discuss it.   Yesterday my car broke down and so I asked my roommate drive me.   Really the only thought in my head at this time is, hopefully this doesn’t take too long because I have way too much studying to do . The first exam in my anatomy course is on Monday, and I am definitely less than prepared. The dentist came in holding a piece of paper and sat down next to me.   She said that she received the report on the tissue sample and then she started reading it aloud. I didn’t really understand what she was saying, as most of it sounded like medical jargon.   Then she said, “I’m sorry, I don’t know how to do this. I’ve never had to give anyone this bad of news before.” I felt my heart sink and had the immediate realization ...