How It All Started

**The following are journal entries I wrote before I actually set up the blog**

- Wednesday, December 26, 2012

Its 2 AM the day after Christmas and I cannot sleep so I have decided to start my journey with cancer journal. It has been suggested by doctors, family members, and friends that I keep a journal of my feelings and experiences as I go through this part of my life. I am writing this not only for myself but also to have an easy way to share my experiences with my extensive support group of friends and family. So here goes nothing. 

*DISCLAMER - Please note I am not a writer. I know I stick commas in the wrong place and use the wrong words so please do not expect much from this! This is just me writing down my thoughts and experiences, bad grammar and all.

My story with Hodgkins began a little over a year ago during Thanksgiving vacation 2011. I was on our family’s annual (usually) trip to the Okeefanokee Swamp with friends for Thanksgiving and I started getting severe shoulder blade pain right below my neck on my right side. I mainly experienced it at night but it hurt so bad I had to hold my shoulder the majority of the time. Right before our trip I was doing an intense boot camp and I also had just run my first half marathon, not to mention we were camping, so I just figured it was a pulled muscle or something related to those things. The pain eventually went away and I didn’t think much more of it. Months went by and I started to notice I was getting similar pain every time I drank alcohol. The pain would come in my shoulder blade as soon as I took a sip of alcohol and would last about 5-10 minutes and then would be gone. I remember saying something to a few friends about this and they told me I was probably just noticing the pain when I drink but that it is there at other times. I am known among my friends for not being “ in-tune” with my body and they are absolutely right. I tend to take things as they come vs. wondering what causes things and listening to issues I may have. 

By April however I knew the pain was still happening and I knew it was only when I drank alcohol. I of course did a google search and one of the first and only things to pop up was Hodgkins Lymphoma Cancer. This freaked me out but everyone knows and says that every medical problem you google will somehow lead you to cancer. That along with my dislike of going to the doctor put this thought out of my mind. Fast forward six months later to October and I started to feel the pain a little more and not always when I was drinking. My shoulder would get achy if I  stayed in a certain position for too long. This of course could be related to a number of different things so again I didn't think much of it. Then came an itchy patch on my neck the end of October. I am not usually alarmed by itchy skin, especially during cold months, but the itchiness along with the pain worried me, both are symptoms of Hodgkins. A week later while at work I found a lump on my neck and was immediately freaked out.  I remember sitting at my desk feeling this hard bump above my collar bone and just being like “crap, its cancer.” 

Thank goodness for gchat (an instant message system for those unaware) because I was able to share this new found lump and my worries with friends right away and immediately got support. My good friend Rachel offered to go to Patient First with me after work to get it checked out and help put my mind to ease. The doctor at Patient First took some X-Rays and did some blood work. We found out I was anemic but aside from that she thought it was just a bump caused by an infection or virus. She said that it should be gone within 14 days and if not then I should get an MRI. I went ahead and made an appointment with a general practitioner for two weeks later just in case. 18 days later, the day of my appointment, the bump was still there. The doctor was not too alarmed because it is not as hard as most bumps caused by Cancer but she did not like the size of it, that day she measured it as 3.5 x 4 cm (that is what she could measure from it sticking out). That appointment led to blood work, a fine needle biopsy, and an ultrasound the following week. The ultrasound found that it was in fact a lymphnode that was enlarged. The fine needle biopsy did not get enough information to make a diagnosis so the doctor said I had two options, get a surgical biopsy or meet with a cancer and blood specialist. She suggested meeting with the specialist so that is what I did. 

I met with Dr. Mitchell at the Virginia Cancer Institute the following week and after reviewing my results from the blood work, fine needle biopsy and ultrasound he said he was quite certain I had Hodgkins Lymphoma. He could not give an exact diagnosis yet, that we needed to run more tests, but that he was pretty sure that's what it is. So certain that he wanted me to get a port put in for chemotherapy. From that appointment came appointments for a cat scan and a surgical biopsy (to take a piece of the lymphnode) and port placement. On Christmas Eve I drank a ton of barium (what you have to drink before the cat scan, sooooo gross!), had the scan, and met with Dr. Mitchell to discuss the results. The scan showed enlarged lymphondes around my neck and collar bone as well as a possible one by my pelvis. He said from there I needed to get a pet scan, a bone marrow biopsy, and tests to check my heart and lungs. The pet scan will show us where the cancer is and the bone marrow biopsy will just make sure there is no cancer there. The heart and lung tests are to make sure they are in good condition to undergo chemo. 

I was supposed to have the surgical biopsy and port placement tomorrow but I found out today that it is actually just a consultation with the surgeon. I am very nervous about the port placement because until now it hasn't felt but so real but having a port in my chest that I will see everyday makes it very real. So we'll see how that consultation goes. 

I am so grateful for the support I have received from the family members, friends, and coworkers who know what I am going through right now. I have not told too many people yet because I wanted to wait till I knew my exact diagnosis but the people I have told have made this process so much easier. My parents are absolutely amazing and are with me every step and I could not do it without them. I have my moments when I get sad or scared but for the most part Im going at this with a positive attitude and ready to beat it. I consider myself very lucky that it is Hodgkins and not some other kind of cancer. Hodgkins has a very high curable rate, around 95%, and I should not have to undergo any major surgeries or lose body parts. The main course of treatment is chemotherapy and possibly radiation. Losing my hair is going to be extremely hard for me but I remind myself everyday how it is just hair and it will grow back, it could be so much worse. So I thank my lucky stars it is nothing worse than this and for being given such an amazing support group and being able to go through this in the comfort of my home. I know there are people out there who have to go through these things with neither and I can not imagine how hard that must be.

- Saturday, December 29, 2012

The surgical appointment went well, the surgeon basically told me where he was going to cut and where the port will be placed. The surgery was scheduled for next Thursday, January 3rd but now we have canceled it. Although I like my current doctor, Dr. Mitchell, my parents would really like for me to start going to the Massey Cancer Center. Massey is one of the top cancer centers in the state and would make the process somewhat easier. Right now it seems like every appointment is at a different hospital and I am having to fill out new paperwork everywhere I go. Going to Massey would centralize everything. It is also an educational hospital so they are in the know of the latest research. I am now set to meet with Dr. Wiedl at Massey on Tuesday, January 8th, she specializes in Hodgkins and in young adult oncology. I think in the long run this will be best but it is discouraging that it adds another step and elongates the process. Dr. Wiedl suggested we cancel the surgical biopsy because she thinks the pathologists there may be able to give a diagnosis without it. She said to keep my pet scan appointment (for Jan 4th) though, then we'll go from there after the appointment with her on the 8th. I still have appointments set up for my heart and lung testing but these will depend on what she says. 

This weekend I am in the OBX with some of my best friends. It is a nice vacation from all that is going on back at home and the many doctor’s appointments. However it has been hard to stop my brain from thinking about it constantly. How how this is going to affect work, how I need to step down from all of the volunteer projects, everything I need to do, and how this may be the last time in a long time I am going to be able to just hang out with my friends and not feel like complete crap. 

I think one of the hardest things is not knowing how chemo is going to affect me. I remember when I was first told I probably have Hodgkins and that I will have to do chemo I was still thinking I could do the DC Rock and Roll half marathon I was planning to do this April. I figured I could at least walk it. Now, as I read more and more about people who have and have had Hodgkins reality is starting to set in. These people are talking about how they were excited when they had enough energy to go out to dinner with friends. This scares me, I am a very active person and I hate being stuck inside all day and that’s exactly what it seems this may do. At least I guess I’ll be sleeping and maybe I wont notice it as much. I had just decided this October to start training for my first Marathon. I have had a trainer for the past two months who is helping me prepare and my parents got me a garmin watch. Now that dream is being put on hold. I guess on the bright side maybe all of this will make me even more determined and motivated to complete one when this is all said and done. I just wish I knew now what my limitations are going to be as I go through this. I am such a planner so not knowing what I will and will not be able to do over the next year is killing me. These next few months are going to be hard for me to make myself realize that I do have limitations and for my own good I need to put my activities on hold for a little bit and focus on rest and my health.