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!