Christmas time is one of my all-time favorite parts of the year. I love everyone being in the Christmas spirit, the music, the movies, and all of the traditions. During this time of year I feel so thankful for the life I have. It is crazy to me to think about this time three years ago and how I was having scan after scan and about to embark on an experience that would forever change my life. In some respects it feels so long ago and other times it feels like it all just happened yesterday.

I am happy to say that I am still doing well and I have nothing new to report. No news is good news for me right now! I continue to be in good spirits and am thankful for that and the calming I feel right now compared to times in the past. I did recently have my mammogram and a MRI attempt so I thought I would share about those experiences for those who may need to get one or both soon.

So the mammogram... if you don't want to hear boob talk don't read any more of this post :) As I mentioned in previous posts my doctor decided that I should start getting a mammogram yearly now since I had radiation on my chest. Women normally need to start getting mammograms in their later 40s. I had heard stories about mammograms both bad and good so I wasn't sure what to expect. However, after all of the scans and tests I have had in the past couple of years I was not too nervous for this. Since I am younger the doctor set up for me to have a mammogram followed by a breast MRI. I had never had a MRI before but again after all of the other scans I was not too nervous for that either. It is my understanding that they like to have a breast MRI following a mammogram on younger patients because our breasts are more dense and it's harder to see everything solely based on the mammogram.

The mammogram went very well and I did not find it that bad. You wear a robe that is open in the front but you can keep your pants/skirt on (don't wear a dress). You come into a room with the technician and of course a large machine. The technician positions you so that you are closely in front of the machine. She adjusts the machine so that there is a platform right at your breast level. She then pulls one of your breasts to lay on the platform and then adjusts a clamp to kind of smoosh it down. It is definitely not the most comfortable thing and pinches but I did not find it too painful. The technician then goes to a computer in the room and takes a few pictures. I think I had to stand like that for maybe 20 seconds or so. If you had to stay like that for a lengthy period of time it would definitely hurt but for 20 seconds I did not find it that bad. She then adjusts you in the same manner but at different angles and then does the same thing to the other breast. I found the whole experience pretty painless and short. I will say I have heard from women that have smaller breasts that it is much more painful so just be aware that the experience definitely depends on your breast size.

It is exactly like this

I then went down to get ready for my MRI. The MRI is like a CAT scan in that you have to get an IV and at one point they insert contrast into your system. The nurse told me more about the MRI process while I was getting my IV, which takes a long time these days since I do not have a port and its hard to find a vein. Her description of the MRI was making me a little nervous but I was still feeling okay and ready. She told me how MRIs are like PET and CT scans in that you lay on a board and they slide you through. However for an MRI there is a closure at one end. For a breast MRI you lay on your stomach and they have two holes that your breasts fall through. She said this type of MRI is actually better because your head is toward the opening where most of the other MRI scans your feet are at the opening. I liked this because I am somewhat claustrophobic and the idea of not being by an opening freaks me out. The nurse also told me that MRIs are very loud. It sounds like someone is drilling in the next room so the patient has to wear earplugs or headphones with music and that some wear both.

As I walked into the room with the MRI machine my anxiety started to rise a little bit. I laid down on my stomach and got positioned and "comfortable" and then the nurse asked me if I would like headphones or ear plugs. I didn't know which would be better but I figured music would be good since you have to lay there for 25 minutes so I asked for Disney pandora, you know, to put me in a happy place. She placed the headphones on my head and then my anxiety started to rise even higher. The headphones are the huge ear covering headphones so I then felt even more constricted. They give you a button to hold in your hand so that at any point you want to stop you can push it and the nurse will come. Well I started pushing mine before I was even fully in the machine ha. She started to slide me into the machine and then my anxiety was at top notch and I couldn't do it. I started crying and asked that we stop. I do not like to cry in public so this was a big deal for me which had me embarrassed and then made me cry even more. I was a hot mess! I think through this whole experience I have only cried a few times in front of people other than my parents and that had to do with being in immense pain so I knew when the tears started coming that the MRI was not going to happen for me that day. I felt so bad since I had taken so much of their time but the nurse comforted me and told me it was no big deal and that this happens frequently. She told me I would just have to notify my doctor and they would prescribe me with valium to help me get through the experience the next time. So the MRI was a major fail for me. I do not know how people do them without some prescription assistance! And even then I am still not sure if that is going to help enough to get me through it.

I told my doctor what happened and luckily she had already gotten my mammogram results, which were good (woohoo!), and she said I no longer had to get the MRI. Thank goodness!!! Hopefully the next time I have to get an MRI I will be better prepared and a lot calmer. However, I am very glad I do not have to get one anytime soon.

I recently found out that Dr. Wiedl will no longer be my oncologist. I loved having Dr. Wiedl as my doctor and am very sad to have her go. She was predominately a pediatric oncologist but she also had some young adult patients. Now she is going to work solely with children. I have not had an appointment with my new oncologist yet but it is going to be very weird having someone new. Dr. Wiedl was with me every step of my journey and brought me such comfort and assurance during scary times. I was lucky to have her!!

Although the MRI was a traumatizing experience for me I am very grateful that that is the most anxious I have been in the past 4 months. I am so thankful for the health I currently have and all of the friends and family I have that continue to support me through this journey (and all of my other life journeys). My next PET scan is scheduled for February so I will report more then and hopefully I will continue to have no news. Thank you all and Happy Holidays!!

6 Month Check Up - Good News

I recently had my 6 month check up and walked away with good news, my PET scan came back completely clear! This is the first time ever (since the cancer came into my life almost 3 years ago) that I have had a completely clear PET scan so that was pretty exciting. My last few PET scans  - October 2014 and February 2015 - showed a curious spot but it was gradually getting smaller so Dr. Wiedl decided we would just keep an eye on it, and now that spot is gone. Woop Woop!!

As you all know the pet scans are very stressful and anxious things to go through. The few weeks leading up to it are pretty hard. The question of "what if?" is constantly running through my head. However, I will say I have had a great past 6 months and look forward to another great 6 months with this good news in hand. The few months directly after hearing a good PET scan verdict are so nice. I actually get some time to not feel anxious and worrisome about things.

So my regime for the next 4 years or so will be a PET scan every 6 months and if things stay good through that time it will then move to yearly. I also have other tests I get regularly that I am not sure how long they will remain. Last month I had a pulmonary exam (check out my lungs) an echo cardio exam (check out my heart), and a thyroid ultrasound (check out my thyroids) and all came back good, Woohoo! They want to make sure my heart and lungs are recovering from all of the treatment I went through and they are checking my thyroids since my radiation was done in that area of my body. I will have yearly mammograms starting this fall as well since my radiation was in that area. Hopefully all of these tests will remain clear and good for the rest of my life but it is a comfort to know if for some reason they do ever see something it will be caught super early.

On the medicine side of things I luckily only need to take vitamin supplements and have no major medications to take. I always had low iron prior to treatment but the chemo effected it even more, as well as my magnesium, vitamin D, and potassium levels. So I gave in and bought a pill box to hold my multitude of vitamins :)

I feel very fortunate that I continue to be in remission and have had some good days recently!! I am thanking God and my lucky stars everyday and continue to keep those in my thoughts and prayers who are still going through treatment and hard diagnoses.

As always thank you for your continued support, thoughts, and prayers through everything!! I will continue to give updates as I go through different tests and will write when I think of anything else worth sharing. 

On a side note if you are in Richmond and are not doing something Saturday, September 12th go to Massey on the River!! It is such a fun event and benefits the Massey Cancer Center. Not to mention my brother's band, Three Sheets to the Wind, will be playing so it will have the best entertainment ever!! Find out more information HERE.

Port-tastic News!

After more than two years with a portacath in my chest I recently got it removed. I no longer have a bump sticking oddly out of my right chest. In case you do not remember what the port is all about it is "a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein." It is basically placed in patients going through Cancer so they can easily draw blood for labs and give you chemotherapy and other meds. This way they do not have to try and find a vein every time they need to access you.

If you recall from early posts I was very nervous about getting this. It was my visible evidence that I had cancer, since I had none at the time. Post cancer it was the visible evidence and reminder that I had had cancer. Although I did not like the idea of it in the beginning I will say through the years I grew an attachment to it. I know that sounds super weird and its hard for even me to understand but when Dr. Wiedl said it was time to schedule for it to get removed I got super nervous. She was surprised by my reaction, thinking I would be excited at the symbolism of getting it removed. This means my cancer journey is hopefully over. However for me it raised a lot of other emotions. 

I was scared, nervous, and anxious. Is this really it? What if I get it removed and then the cancer comes back and I no longer have my trusty friend to help me get through treatments? I don't want to have to go through all of those surgeries again. What if by getting it out I am jinxing myself? This means there no longer will be any obvious evidence I have had cancer, nothing to show all that I've gone through. Shouldn't I be glad by that? These are just some of the many questions I asked myself, half of which I didn't and don't understand why I feel that way. But I knew that oddly I was going to miss my port. 

I could tell Dr. Wiedl could kind of sense where I was coming from. She said we could wait and hold off a little longer if I would like but she also said she thought I should get it removed. That it was time to shut this door and move on... Something I ultimately ended up agreeing with and doing but how do I move on from something that has changed my life completely? I still haven't quite figured that one out yet but I did come to agree that getting my port removed was probably the first step in that process.  

I went to the doctor one bright Friday morning and got it removed. It took a little less than two hours and not near as much pain as it did to get it inserted. I had read in other people's blogs that they kept theirs (one person even got her's bronzed) so I asked to do the same. It is nothing like what I expected it to look like. I thought it was this huge silver thing inside of me... instead its a small plastic thing. 

My Port! 

I will say post getting it removed I have become more excited that its gone. I am looking forward to a summer of dresses and tank tops portless. And now where my port once was is just another scar. My 5 scars and 4 radiation tattoos from this journey are reminders to me daily to be grateful for the life I have. 

How Are You Doing?

Its been a long time since my last post and I've had some people ask me how I'm doing so I thought I'd give an honest update. My initial response to the how are you doing question is "great, everything is going well." Which for the most part is pretty true. I am very happy with where I am in my life right now and have so many great positive things going for me. I thank God every single day for all of the wonderful things I have going in my life right now. However I think saying "great, everything is going well" is not honest and does not always give people an accurate look to what its like to go through cancer. So Im going to revert back to that "honesty is key" saying for this post.

In trying to stay honest this post is going to give a look at how I am doing internally and where my head is at these days. I am still in remission, thank you baby Jesus, and I am extremely grateful for that. There is not a greater gift I could have asked for this holiday season than to go through it without doctors appointments, or scans, or counting down the days to some form of treatment that was coming up in January aka how I have spent the last two Christmases. My heart breaks everyday for my friends (and everyone) who do not have that luxury right now. I wish with all my might I could take the evil cancer away from them. When I started this cancer journey I was not close to anyone who had cancer. I did not know what it was like to be on the supportive side of the game, I was just learning how to be the fighter. Now I know and it sucks. It is a very hopeless feeling to watch your friends physically and emotionally suffer and not be able to do anything. However I also know after being on the fighting side that just hearing you are there for them and that you are supporting them means the world. I am not always great at remembering this myself and hope with this year I get better at sending out words of support to friends I know going through tough times but it really does mean a lot just to hear "Im thinking about you."

I am so thankful for remission but to be honest my struggle with cancer is nowhere near done. I battle everyday with thinking about cancer, my experiences and where my head should be at. I basically wake up everyday scared shitless of cancer (sorry for the profanity, I was going to say scared poopless but that just sounded worse haha). Anywho, that is my truth. It is something I battle everyday. I try not to. I try to put it out of my head but its there and its way worse than before I had cancer or when I was battling cancer. Its terrifying. Thankfully I know this is not just me and a lot of other people who have battled cancer feel the same way.

Everyday I have a different response to this terror. Some days I'm angry and I want to do everything I can to kick cancer's butt so no one else has to suffer. I want to fundraise and get the word out so everyone will help to just make it go away. Other days I do not want to hear, see, or think the word cancer. I cringe at every post and article I see that mentions the word cancer. I dont want to think about it. I basically want to forget it even exists. There are some days when I am lucky and I am able to find a good balance between these two extreme feelings. However it is not easy and I think its going to take me a long time to be able to do that on a daily basis.

Even though these are my internal feelings I do try very hard every day to stay positive and see the good in the bad things that come. These feelings are hard to deal with and can easily suck you into the dark side. I think with this and basically anything in life its important to know your feelings, be honest about them, accept them, and work through them. Its not easy to do but its the only way to keep moving and not dwell on what you can not change. Because unfortunately there is soooo much we can not change. And even though cancer does absolutely suck and its extremely hard to deal with there are so many good things in this world and so many things to be thankful for. There are also wonderful things that come from the bad. I have met so many amazing and inspiring people I never would have met without this battle. I also have learned so much more about myself and the life I want to lead that I did not know before. I do not wish I was the person I was before all of this. I like who I am and who this struggle has made me. I pray everyday that I do not have to have any more battles with cancer but I am happy with where I am right now even though it took a fight with cancer to get me here. For me remembering and focusing on these positive things is what helps get me through.

So that is my honesty and how I am doing. I fill each day with thankfulness for my life and my many blessings but also with prayers to remain mentally and physically strong and that cancer stays far far away. With that I am very excited for the start of a new year and am looking forward to all the wonderful things it will bring with it. As always thank you so much for your continued love and support. I hope everyone has had a wonderful holiday season and has an amazing start to the new year!!

First Descents - Part 1

I have tons to say about First Descents so I have decided to split them up into multiple posts. So here goes the first one!

In February of last year my oncologist asked me if I would be interested in doing something outdoor adventureish in May with Massey and a group that does outdoor programs for young adults with cancer. She didnt have many details at the time but with the words "outdoors" and "young adults" in the description I figured it would be something I'd enjoy and said sure. Months went by and I didnt really think any more about it. In April my oncologist reminded me about this opportunity and thats when I started to second guess myself. At the time I wasnt sure what we would be doing and I was intimidated by the fact that I still did not have all of my strength back post radiation (and really chemo). I also was nervous to meet other young adults with cancer. Through my journey with cancer I never went to a support group. In fact aside from some of my coworkers who also had cancer I never really talked with many other people about it and definitely not people my age. However, I pushed these nerves aside and decided that I would not let cancer keep me from anything else and that I should not pass up this opportunity. Shortly after the talk with my oncologist I received an email from First Descents welcoming me to the event. This was the first time I actually saw the organization's name and so of course I immediately googled it. The website was filled with pictures and stories of participants describing their experiences. The organization looked awesome and made me very excited for the upcoming event.

If you read the Richmond Magazine article posted in my previous blog post you know that our activity that day was rafting down the James. For those of you not familiar with Richmond the James is a large river, with rapids, that flows down the middle of our city. In fact we are the only urban setting with Class III and IV rapids, get it Richmond! :)  Its great because you can put in further up the river and its like you are in the middle of the woods and then after you float down the river a ways you are in the middle of the city.

Needless to say the experience was great! The rafting part was so much fun but even better was getting to meet all of the people. There were Massey employees and patients, as well as FD alum and employees, on the trip. Before we began our rafting trip we were all given nicknames. This is a major part of FD, everyone who participates in an FD program is given a nickname and that is your name from there on out. My FD name is Dimples :) Through talking with the FD alum I got to hear first hand about their week long FD programs. Lucky for me the three alum that were there had all done different programs (white water kayaking, surfing, and rock climbing). It was nice to hear their perspectives on the sports and hear about their experiences. As with any program the best advertisements are former participants. They got me so excited about this organization that by the end of the day I could not wait to sign up for a program. It was also nice just to hang out with other young adults who have/had cancer. With my surgery coming up soon after it was encouraging and inspiring to talk with others who had been through similar things. After that day I did not feel as nervous about the up coming procedure.

The next day I applied for a week long FD program. I applied close to the start of their programs so most were already filled and I was put on a waiting list. Luckily I got an email a few weeks later saying they had spots open in a white water kayaking program in Glacier National Park. My initial intent was to do a surfing program but when I saw that opportunity I could not pass it up. I mean its Glacier National Park! In my next post I will tell all about that FD trip.

Here are some pics from the rafting trip!

Getting reading to head out on the river

Our lunch break had an amazing view of the Carrilon in Byrd Park

A great tradition in FD is the baci ceremony, which mimics that of the baci ceremonies
performed in Laos, where you tie string on a
fellow participant. I will go more into the baci ceremony in my next post.

Sweet D, aka world renowned kayaker, Willie Kern, was our FD leader
for the day and performed the baci ceremony

Out on the river 

My raft before our last rapids 

Our leaders for the day 

The FDi Group! 

Post Surgery Recap

I have been thinking about when I was first diagnosed a lot lately. From my feelings after my diagnosis to how I prepared myself for treatment to how much has changed since then. I remember trying to prepare myself by googling hodgkins lymphoma blogs. I am pretty sure I stayed up all night every night reading almost every blog on hodgkins there was. I wanted to prepare myself for every possible scenario that may come about and it also was comforting knowing there were others out there going through the same thing. In fact this is one of the main reasons I started this blog, I wanted to be for others what all of those blogs were for me. However as I have progressed with my blog I have started to sock at giving updates and I was just thinking to myself how annoyed I always was when I ran into a blog that just left me hanging. Sooooo I've decided to get better at this blog thing for realz!! I am hoping to at least write a weekly blog post.

So yea, the last I wrote was 7 weeks ago (wowzers), right before my surgery. I am happy to say that the surgery went well and that the results of the surgery were great, my spot was benign. I went in for surgery early Friday morning ready to get it done and over with. I wasnt as nervous as I thought I was going to be, I actually slept the night before which isnt usually the case when I have new medical procedures the next day. Everyone I met that would be working on me that day was so nice and many of them knew one or two of my sorority sisters. Have I mentioned that I love going to a hospital where the majority of my medical professional friends work or went to school?!?! Its awesome. In fact the last thing I remember before surgery was seeing my good friend's face as I was being wheeled to the operating room. That was such a comfort.

I woke up in the recovery area and immediately started touching my chest trying to feel to see if they had to go through that way. I could not tell and was trying to ask the nurse but my voice was so scratchy from the breathing tube (they took it out before I woke up) she couldnt understand what I was saying. Eventually though she got my point and told me they didnt. I was sooo excited by this, although due to all of the drugs the excitement didnt really set in till later ha. When I got to my room my parents also brought to my attention that I did not have a chest tube. Another major woohoo! Dr. Cassano came in shortly later and told me the surgery went great and they were able to get in from the side without any major issues. I now have three incisions, two to the right of my right breast and one underneath it. He even kept in mind bathing suits and dresses, trying to make the incisions somewhere they would not be seen. You have no idea how considerate and kind that was and how great that made me feel that he actually thought about me when doing the procedure. He also told me that from his initial viewing of the tissue he did not think it was cancer. We still would have to wait for the pathology results to know for certain but he thought I was in the clear. Although this was great to hear I did not let my mind fully go there yet. I wanted the official test results before I'd let myself truly venture to that idea.

One of the greatest benefits of them not having to go through my chest or give me a chest tube was that I got to leave the hospital a lot sooner than we had initially thought. Recovery in the hospital was no bueno. There is no resting in the hospital, every few minutes there was tons of loud beeping. A floor close by was under construction so although you usually get your own room we were doubled up. This is completely understandable but the person in my room was going through dialysis, a very loud process with lots of cumbersome equipment. At one point the room got so overwhelming I just broke down. I was in so much pain, there were so many people in the room, and the noise was too much to handle. It was not a good situation. So when they said the next day that if they saw that taking the pain medicine by pill form would work for me I could go home I jumped on that.

This was my first major surgery and let me just say, recovery is the pits, the absolute pits. I don't know how people go through so many surgeries. I am so happy this is the only one I have had to do through my treatment so far. I was in so much pain for the weeks following and was hardly able to do anything. In usual Amber form I had gotten into my head that I'd be able to go into work the following Thursday with no problems. Wrong! By Thursday I was still in so much pain I wanted to up my pain medication. It is still uncomfortable to sleep on my right side. They had to collapse my lung during treatment so I also had to do multiple lung exercises daily and pay attention to my breathing. Lifting more than 5 lbs for 6 weeks was also not allowed which let me tell you is the hardest thing ever when you have the cutest baby nephew in the world that you just want to pick up all of the time.

The Wednesday after my surgery Dr. Wiedl called to tell me that Dr. Cassano was right and my spot was benign. I can't even explain all of the emotions I felt upon hearing that and I am not sure I ever will. I still have a lot of disbelief and Im not sure when that will go away. I honestly did not think it was going to be good news and had prepared myself mentally for the next round of treatment. I am so happy and lucky that it did not come to that at this time and I plan to take advantage of every minute I have healthy for the rest of my life.

I am ready to make this the best year ever and my first step towards that was participating in a First Descents program. It was such an amazing experience! I am going to talk about it in next week's post but seriously, if you know any young adults who have or who have had cancer tell them to google First Descents now. They will not regret it. On that note, if you haven't already, take a minute to read this article https://www.richmondmagazine.com/articles/first-descents-amber-berry.html  in Richmond Magazine on First Descents, Massey, and me!!

Thank you times a million for all of your continued love and support!!


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Surgery Update and Radiation Experience

This post is pretty long!! It gives an update on my upcoming surgery and then gives my mini overview on my radiation experiences AND has a link to an awesome video of radiation. 

Update! 

Last week I met with my surgeon, Dr. Cassano. He was very nice and great at explaining things and making sure I fully understood what was going to happen. He was also very personable which was a nice surprise, I have not found that to be too common with surgeons so far. He was cracking jokes and making me feel very comfortable and relaxed which was nice. Dr. Cassano showed me my PET scan results and the results of the CT scan I had the Friday before. These images are taken in slices and go from the head down so he described what we were looking at and where we saw the spot. In these tests they are looking for spots that glow. There are spots that should always glow like your heart and other organs but then there are spots that should not and that means there's something there that shouldn't be. He showed me my spot, nestled nicely in between the artery that takes blood to my whole body and the artery that takes blood to my heart, oh and my heart... Its nice its found such a comfortable spot but commmeee oonn. Couldnt you be in my thumb or something?! 

He explained that if I had not had radiation this procedure would be pretty simple but because I have it complicates things a tad. Apparently our lungs are in sacs (not the actual lung sac but like an extra protective sac) and when you have radiation those protective sacs are killed. Now I am assuming this isnt that big of a deal in the grand scheme of things since this was the first time I had heard about the disappearance of my protective lung sac. But due to the missing sac my lungs can move around and stick to other things... I am sure I am probably explaining this completely wrong as I am not a medical professional but this is my elementary version of what he told me ha... So my lungs could be in a place they dont want them to be which will make it harder for them to reach my spot. 

They are going to try and go in from my side, under my right arm, but due to this lung issue they may not be able to reach it from there. If they can not then they will go through my chest. He said they would make an incision in the middle of my chest and probably have to pop out a rib head. I asked if they would pop it back in and no such luck. I guess they cant do such things. I mean come on medical people lets get on that ha. Oh well, womp woompp. So that means if they go in that way I may have a little divot on my chest or something. Unfortunately they will not know if they need to go in through the chest until they have already tried the under arm, so I wont know till I wake up what exactly they've done. Having to go in from the chest will also mean a longer recovery process. So I am hoping my lungs will behave themselves and they can get in through the side. 

As I mentioned before my oncologist stressed getting this done as soon as we can so we scheduled the surgery for this Friday morning. I will be in the hospital for 3-5 days depending on my pain and how it goes and then will be in recovery for 1-5 weeks. When he first described this I was envisioning being stuck in bed for weeks on weeks but luckily we found out that that is the time it will take me to fully heal but that they want me to go back to work and get back to my normal as soon as I feel able. I will not be able to lift heavy things or run for a few weeks but aside from that they want me to move my arm around and try to function normally, even if there is some pain so my arm does not "freeze" from not getting use. I will be on pain meds for at least a week after and will need someone around me 24/7 in case I get sick or need anything and to chauffeur me around :) . So that is the game plan. It sounds like it is going to be pretty painful so I am definitely not looking forward to that but its also hard to fully understand the pain level since you just dont know until it happens. The nurse said some people feel okay a few days after they get home and some people it takes weeks. So we'll see. 

After meeting with the surgeons I was very nervous. It was great that he went into detail with everything but that also made it a little scarier. I hear "deflating my lung," "tube down my throat," "chest tube," "spot by heart," over and over again in my head. At one point during the appointment he said a radiation oncologist had looked at the scans as well and thinks that if it wasnt cancer it wouldnt show up so much on the scan. So a part of me was like then why even do this? Lets just start the next steps but hopefully he is just wrong and we'll find out it isnt cancer. 

As the days have gone on since that appointment I have started to feel more and more comfortable with the situation. I have received so much strength from talking to others who have been through similar situations and it has helped me feel less scared and ready to take on this process. Last Thursday I took part in a day of rafting down the James with Massey and a non profit called First Descents that was in town for Riverrock. First Descents is an amazing organization that provides outdoor adventure programs like kayaking, rock climbing, and surfing to young adults who have or had cancer. It was an amazing day and I am so happy Massey teamed up with FD to have that day of rafting. I want to go into more detail about the day and First Descents but I am going to wait for another blog post for that. But through that experience I was able to meet other people my age who have gone through or are still going through similar circumstances. We never talked in depth about our situations but it was so inspiring just to be around them and to know what struggles they've faced and overcome, it helped me feel like pishposh to being scared about this surgery. I also have a few good friends who I have been able to talk to about their experiences with past surgeries and scars and that has really helped me feel better about everything. So now I'm ready to get it done and find out whats next!  

Radiation 

(Written 6 weeks ago, before I found out results)  

As I mentioned in a previous post the first couple sessions of radiation were pretty nerve racking and emotionally hard to handle. However I would say after that first week it became pretty routine. So much so sometimes I wished the process would take a little longer so I could take a nap ha. I went to Massey every day for 24 days, and every day I would sign in, put on a robe, and wait to get called. I saw the same people in the waiting room every day, some were going through more intensive treatments and some were done before I was. I would get called back and lay down on the board, get my mask on, and the radiation technicians would line up my body with the laser to ensure that every day I was in the exact right position. Then they would leave the room, I would hear a buzz, and voila, I was done! On a good day I would be in and out of Massey in an hour. 

My friend who was one of my radiation technicians recently posted on fb this video a guy made who was going through radiation. He put recorders all around the room and was able to really capture the radiation process. His mask is slightly different from the way mine was but aside from that its pretty spot on to what I would do everyday. Click HERE to check it out. 

Starting in the second week my throat started to get pretty sore from the radiation burning my esophugus and my skin was getting irritated. At that point it felt like a bad cold. By the start of the third week though the pain in my throat was pretty bad. It hurt to talk or swallow or basically do anything that involved any movement of my throat. The doctors prescribed me oxycodine but I am not a huge fan of that stuff unless it is absolutely necessary. For me it makes me unable to work because I feel so drugged or nauseous and as I was working and going through radiation, taking that was just not an option. They also gave me magic mouthwash, which is a combo of three different drugs that you gargle and/or swallow that numbs up your mouth/throat. This stuff worked pretty well but I still was unable to eat much. I think my diet consisted of mashed potatoes and soup. 

By the end of the third week my skin was extremely irritated. It looked like a severe burn on my chest and blistered in certain spots. It was extremely itchy and made it hard to sleep.  It is kind of hard to see but below are a few pictures of my irritated skin. 

Between the throat pain and skin irritation I was getting anxious about going to radiation treatments again. I had gotten used to the process but now every time I laid down and heard the buzz of radiation it made me scared for how much worse the pain may get. I would just lay there and apologize to my body ha. I dont know if other people do this but since going through this process I talk to my body a lot, yea may be going a little cray cray. But think it helps and don't worry I've never heard it talk back :)

The nurses gave me a lotion to use but I honestly did not think it did much. I had bought some lotion on my own with aloe in it but they said to make sure any lotion I used did not have metal in it. Apparently a lot of lotions do contain metal and that can irritate your skin even more. One of my best friends, Leslie, told me about this lotion she uses called Noni Nectar lotion, from Hawaii. She brought me some and I seriously think it helped to heal up my skin a lot faster than it would have otherwise. The doctors were surprised with how irritated my skin got from the radiation. They said it was probably due to my age and just finishing chemo not long ago. I thought it was going to take a long time for my skin to heal and thought for sure I would have some scarring but after a week or so of finishing my skin was back to normal. I really think the Noni Nectar lotion helped a lot and it is now my go to lotion. 

The radiation also made me pretty tired. Doing radiation and working a lot was definitely hard but I liked having something to think about outside of what I was going through and I couldnt ask for a better place to work. Everyone I work with and all of the volunteers and just the whole Saint Gertrude community is extremely supportive and that made the process a little bit easier. 

After my last radiation they gave me my mask to keep and a little certificate :) 

By two weeks post radiation I was feeling a lot better. My throat and skin were back to normal and my energy was slowly getting there. I went and met with my radiation oncologists the end of March. They said I looked good and they were hopeful that the treatment worked. He said it would take awhile to get all of my energy back but aside from that I looked in good shape. He did mention that there is a chance the radiation could affect my thyroids so to be on the look out in 6 months - a year for unexplained tiredness and/or weight gain. Hopefully this will not happen but its good to know it is a possibility. 

From that meeting I went on to meet with my regular oncologist, Dr. Wiedl. At that appointment we discussed the next steps. Now it is a waiting game. It takes a few months for the affects of radiation to really settle in. So we scheduled my PET Scan for the end of April and I will find out the results on the 29th. Eeee to say Im nervous about this is an extreme understatement. I think even if it comes back clear I will not fully believe it for a year or so after. But if it does come back clear I will just come back every 3 months for a check up. She did say that will have to start getting a yearly mammogram and thyroid check since due to where I had radiation getting cancer in these areas is a possibility (hopefully will noooootttt happen). So at least if I ever do get anything else they will catch it pretty quickly since I will be getting tests for the rest of my life on the regular. 

IF the results do not come back as we hoped Dr. Wiedl said we have a lot of options. We first will see if the tumor could be taken out through surgery. I'm going to guess its not because we've kind of looked at that before but who knows. And then there is the bone marrow transplant which I've mentioned in another post and she mentioned a few other options but I kind of zoned out at that point. Im not sure if I've suggested this before but I think its important for you as a cancer patient to either bring a recorder or someone else with you when you go to doctor meetings. I can't tell you how many times Ive zoned out or gotten stuck on one thing she said and didnt hear everything else. If I did not have someone else with me at most of the appointments I wouldnt know a lot of the specifics. It gets overwhelming trying to remember everything. 

So yea, that is where we are. Waiting and waiting. I am feeling good and feeling optimistic about the test results but also aware that there is a slight chance that things may not turn out as I would like. But hopefully that will not be the case. I've started working out again and am slowly building up my strength and stamina. Its crazy how quickly you lose your muscles. I was doing an arm weight machine this week and all I could do was 5lbs and again I spoke to my body and was just like really body?! really? haha But I am trying to take it easy. I think I sometimes like to forget this is all happening and pretend that life is normal and I just have this cancer stuff on the side. Which is good in some ways but bad in the other... 



--As always thank you for your continued support, thoughts, and prayers through everything!! I will give an update as soon as I am dedrugged and feeling up to it after surgery!