My esophagus SUCKS!

Okay....maybe I spoke too soon in my last post, because although radiation may not be that bad compared to chemo, it is not very easy either. I finished my second week of radiation yesterday...10 down, 7 to go! My chest is still really red and hot to touch like a sunburn, and for some reason my skin just feels extremely itchy. Not even the area that's being radiated, but other areas of my body...weird. Starting on Wednesday (after 8 treatments), my esophagus started to feel very raw and tender. It's uncomfortable to swallow, and I can feel the tenderness when I speak or even stand up from laying down. It feels like I swallowed a popsicle stick. Maybe I just have a sucky esophagus, because although it is a different pain this time, I had problems with my esophagus during chemo as well. I've also been extremely tired...not the kind of tired where I can take a nap and feel better, but that fatigue feeling that makes my whole body feel weak and exhausted. I'm sure that my body is still healing from all of the damaging effects of the chemo, and some of the crappiness I feel is probably still lingering from that.

Great quote that I came across

It is so weird to think that "I am a cancer survivor" or "in remission," maybe because I don't really feel like I am. It just doesn't feel "permanent" yet. I'm not finished with radiation, and the thought of the cancer coming back terrifies me...I feel like it can come back at any time, so am almost scared to acknowledge that I have kicked it's ass in fear that it will come back as soon as I start proudly saying that I am a Hodgkin's Lymphoma Survivor. If I pay too much attention to it, I'm scared it will come back. It feels like my remission is just temporary. That's just crazy thinking...trust me, I know! But after going through what I have...you would have crazy thoughts as well. I'm just wondering when I will actually feel "like a survivor?" After 5 years of being in remission, a person is considered "cured." I know that I will always have this worry about cancer coming back...but I just need to find a way to manage that fear and get it under control.

First week of radiation done...not too bad.

5 radiation treatments down...and 12 more to go! I wanted to make it a point to dedicate a few blog entries to my experience with radiation. I was curious about other people's experiences with it, so was trying to look for blogs about it and really could not find too much. I think that by the time people finish chemo, they are just so relieved to be done, that radiation does not seem like much to write about...which I totally understand, but still just wanted to know more about it from other people's personal experiences. So I will tell you about my own!

So far, radiation has not been that bad. Other than a red and warm chest, I haven't really felt very different. My chest feels similar to getting a sunburn. The next day after my first radiation, I felt a little nauseous, but haven't felt that way since. I feel more tired than usual, but was already feeling fatigued before starting radiation. My appointments are Monday-Friday at 3:30 PM, and only take about 10 minutes. When I go there, the ladies at the front desk let me go to the back where I head to the women's changing room area. I change into a hospital gown, and sit in the little waiting area in that same room. The techs come and get me and I head back to the room where I receive the radiation. They position me properly, and make sure that I am in the same exact position every single time, they line up my "tattoos" to the machine in order to do this. I have to reach my hands above my head and hold on to a bar, and am told to stay completely still...but to breathe normally. I always feel like it's so hard to stay still when you know that you HAVE to. They then leave the room for a few minutes, come back in and tell me I am done. Pretty simple and easy process. I see my Radiology Oncologist every Thursday, and she just checks my skin to make sure everything looks good and checks to see if I am experiencing any side effects from the radiation. I saw her yesterday, and she said all looks normal. After every treatment, I go home and put aloe vera gel on my chest and on my back (since I heard the radiation goes right through you). I got 99% aloe vera from Whole Foods. My Doctor said to get unscented and uncolored aloe vera. I then put Aveeno lotion over that to help moisturize my skin. I'm sure that there are even better products out there, but these seem to be helping me.

Since starting radiation on Monday, I have met SO many wonderful women while waiting in the women's changing room area. They are all extremely nice, and their stories are just amazing to me. The six women that I have met so far, all have breast cancer and are all a wide variety of ages...between 32 to 85. I know that I do not have breast cancer, but I want to stress the importance for women to check their breasts frequently for lumps! I have met a lot of young women with my type of cancer...but even more who have breast cancer. The lady I met today was only in her late 40's when she felt a lump in her breast, but had just gotten laid off from her job and had no insurance so put off going to the Doctor. She asked many organizations for help, but was turned away due to budget cuts. She even attempted to contact the Susan G. Komen foundation multiple times, and never got a phone call back...this made me disgusted! The pain and lumps had gotten so bad, that she eventually went to the E.R. and was told that she most likely had breast cancer. It was eventually confirmed that she did have breast cancer for sure, and it had spread to her bones and liver. Her prognosis is not good...only 3-5 years, but it is amazing how positive and optimistic she remains. She has a new job and works everyday in order to make her mortgage payment. She is a true inspiration! She is not married and has no kids, and really only has her sister for emotional support. This made me so sad, and also made me remember just how lucky I am to have such great support from my family and friends. I wish everyone going through cancer had the kind of support that I have been fortunate enough to have through this whole journey. As absolutely horrible as having cancer has been for me, I would have never had the opportunity to meet the amazing people that I have if I had never had it...that almost makes it all worth it...ALMOST :)

CLEAR scan & my 1st radiation treatment

I have GREAT news!! The Hodge has been beaten! I had my PET Scan on Saturday August 6th and had to anxiously wait until today to get my results. Let me tell you, the waiting is HORRIBLE! I do not recommend getting any type of scan on a Saturday when you have to wait longer to get your results since nobody works weekends in Oncology. I guess people are not supposed to have cancer on the weekends? I was going to wait until my radiation appointment today (at 2:30pm) to speak with my Radiation Oncologist to find out my scan results, but was way too anxious and nervous to wait all day, so decided to email my Oncologist and ask for the results. He had his nurse call me back immediately and she said my scan came out good, and shows "no evidence of active disease." This is the BEST news I have ever received in my life!! I was overcome with so many different emotions...all good ones of course! It is unbelievable what I have been through since February and I am just so thankful that chemo worked and killed those nasty cancer cells like it was supposed to.

When I arrived at my radiation appointment, I spoke with my radiation Oncologist who was able to give me more detail about my scan results. She told me that the mass I had above my heart IS still there, but does not show any cancer cells on the PET Scan. She said the mass is about half the size that it was, and could just be scar tissue, but the radiation will ensure that if there were any tiny cancer cells still there that they will be destroyed. I was a little disappointed that there is anything left there at all, but she said that it is very common for there to be residual tissue after chemo...so that made me feel better. She also said that they will watch it as close as they can, especially for the next 18 months. I still CANNOT believe that I am officially in remission!! SO happy!

This looks similar to the machine that I receive radiation from.

I started radiation today, and will be having a total of 17 treatments, going Monday-Friday (about 3 and a 1/2 weeks). I have 1 down....16 more to go! I am hoping that all goes smoothly with radiation. I will feel like I am REALLY done and in remission when I finish radiation. It is a really fast process, much different than the almost 4 hour chemo sessions I was doing. The longest part was just positioning me perfectly on the table, and then it takes just a couple of minutes. Total was about a 15 minute process. Everybody says that you can't feel anything during radiation, but I definitely felt a warm sensation on my chest where they were radiating, but it didn't hurt. And now, my chest is getting more red by the hour and feels really warm. Fingers crossed for limited side effects.

Thank you so very much to all of you who have kept me in your thoughts and prayers! I really do have the most amazing people in my life who have helped me through all of this and I appreciate it SO much! 

SCANic Attack

I have my first PET Scan tomorrow since starting chemo, and I am freaking out a little bit. It seems that most people have a scan at their halfway point with chemo to check their progress and make sure that they are responding well to chemo, but for some reason my Doctor didn't think one would be necessary, so this will be my first since finishing all of my 8 chemo treatments. I have been a little more on edge lately, and my mind only seems to be thinking about those scan results. I constantly play out different scenarios in my head of my Doctor saying that the chemo didn't work, or saying that it did work but I need more because the tumor is still partially there, or everything is clear (which is what I'm hoping for). I am hoping that in the future when I get scanned I am less of a stress case. I've been told that with each clear scan, they get a little easier. But as you can imagine, I am just completely anxious because I have done all of that chemo, and really have no idea whether it worked or not. I know I ask for a lot of good thoughts and prayers, but please send them my way once again for clear PET Scan results! Thank you so much! 

Got ink? I do.

Just a little update of sorts. Nothing too new to report, just enjoying my time before starting radiation. I had an appointment with my Radiology Oncologist on Tuesday July 26th, and they started getting me "prepped" for radiation. My Doctor will decide on the amount of radiation I will receive after she gets my PET scan results, but has decided that I will start radiation on August 8th. My PET scan is on August 6th, so she will have my results by the 8th and decide on my specific radiation plan. During my appointment on Tuesday, I was told that I would get little permanent tattoos of dots on my chest so that they know the area they will be radiating each time. I was so nervous about this since I have no tattoos and was worried it would hurt...such a baby. But it was actually not that bad. They tattooed three very small dots, one right in the middle of my chest (this one hurt the worst), and then one on each side of me (right below my armpits). From what I understand, the tattooed dots just map out the area that they will be radiating. I will keep everybody posted about my PET scan results, and will be sure to write about my experience with radiation. The nurse told me that with radiation to expect major fatigue (already feeling that), a possible sore throat, esophagus pain, trouble swallowing, and a sort of sun burn on the chest and back. Not to mention the possibility of other long term effects that I had to carefully read over and sign a consent for. Usually during radiation they fit a mask to people's faces that basically keeps them in place while receiving the radiation so that they are in the exact same spot every time during treatment, but the nurse said that I will not be needing one...I am a little confused/worried about that since this mask is what keeps people from moving, and helps ensure accuracy. I plan on checking with my Doctor about this...it's not really something that I want them to make a mistake on. I say just give me the mask if it's going to help me from moving while receiving radiation. Above is a picture of what that mask looks like so that you have an idea of what I'm talking about. 

Since chemo has ended, I have physically just felt really exhausted. It seems like I am more fatigued and tired now than I was during chemo. I have also just felt really sore and achy...which I am sure is just from the after effects of the chemo. I'm probably just being overly sensitive, but I feel the expectation that now that I am done with chemo that I should feel back to myself right away, and just jump back into normal life. But I don't feel back to myself or "normal," I expect this to take some time. Unless you or somebody close to you has or had cancer, you probably will not understand that it is quite a process that requires a lot of patience. "After treatment" healing is just as important as during....I feel that I have so much healing to do physically, mentally, and emotionally. It is a long transition to getting back to "normal" life. For many years to come, I will constantly be going to Doctor's appointments and cancer will always be on my mind. I know that once I am "clear," I cannot let this take over my life, and I don't plan on it...but it's not something I can just forget and not worry about either. It has changed my life forever. I have noticed that the emotions of all that I have been through have started to catch up with me a lot. During chemo treatment, I was too sick and "drugged" to really think about what I was going through. Now that chemo has stopped and I can think more clearly, all that I have endured in the last 6 months just seems unreal.

I came across this book and ordered it, I only found it available in the UK, but think that it is one of the best books written for people who have had cancer. I wish that everybody who has been through any type of cancer would read this, it helps so much. It was not that badly priced either, I ordered it off of Amazon...I highly recommend it.