Well friends this is hard. Much harder then I ever thought it would be. I thought when treatment ended the hard would be over.
But it's not.
I was warned that survivors have a difficult time with maintaining there mental state after treatment but I thought I was above that. Always thinking to myself how hard can it be in comparison with getting yourself through treatment.
Keeping myself in a good spot mentally is a daily challenge, sometimes even a minute by minute challenge. It becomes even harder when people are coming at you with drama or you trying to accept not everyone is where I am. On most days I don't have the mental capabilities to deal with much outside of my own head. I have been a cancer survivor for a month now and it has proven to be harder then dealing with the cancer in some respects.
While dealing with cancer everyone understands you aren't in a good place. They understand that you cant handle anyone laying extra burdens on you but then treatment ends and everyone, including myself, thinks you should just be you again. Deal with the smaller stuff, the drama of life, others peoples issues. I can barely deal with getting myself dressed daily, let alone take on everything that I feel is being thrown at me at right now. I do get up everyday, I challenge myself and I do still choose JOY everyday but that doesn't mean I have the ability to take on extra.
Let me back up a little, because I realize I haven't even updated about how radiation ended up going.
I successfully finished 28 rounds of radiation, but not without it's struggles. The first 3 weeks were easy. I was only fatigued from the oral chemotherapy I am still taking. I was able to walk and enjoy myself. We explored a little and even visited the beach during this time.
Around the 4th week I started to develop a burn near my cooler bone and neck. The nurse called it a hot spot. It was where the skin folds while holding up my arm. She said the heat basically stays inside of the pocket and although it is receiving the same dosage of radiation as the rest of my chest the skin can't handle the heat sitting in the pocket. The Doctor continued to treat me during the 4th week in spite of the burn area but when I went back to Portland for my 5th week they sent me home early without treatment because of the burns.
( I don't feel like the pictures really depict how bad the burns were and they definitely don't show how uncomfortable they were. I had many people in the public ask me what happened and was I okay because much of the time it looked pretty bad. The burn cream also made it look worse then it was and I wore the burn cream all the time.)
Apparently the burn can become infected and cause larger issues like hospitalization. Some radiation oncologist will treat through the burn but my doctor is more conservative and was also worried about my high risk of infection due to being on the chemotherapy at the same time. So I was prescribed a burn cream and sent home for the rest of the week. At the time I was devastated. It meant more time in Portland and away from my family.
Although Portland wasn't awful it did cause some strain. Trying to fit in everything in a two day time span when I was home, packing and re packing, making sure my family was taken care of and ready for the week while I was away. The last thing I wanted was for treatment to go longer. In the end it worked out though. Blakelee graduated kindergarten that week they sent me home early and going home allowed me to be with her for her last day of school. Which didn't make up for not taking her to her first day ( because I had testing all day) but it did make me feel like myself for a few minutes.
The 6th week of treatment I still had my burn and it didn't seem to be getting better. We still drove to Portland in spite of feeling like maybe they wouldn't treat me again.
(My last week of Treatment crew)
The nurse was hesitant but did agree to treat me Monday and allow the doctor To see it Tuesday. Tuesday came and the Doctor was also hesitant but because we had a hotel room and I had 4 treatments left she agreed to allow me to finish treatment. I just had to be really careful and clean the burn area well. I did this. Two showers a day lots of burn cream. The burn became mildly worse and some burn areas shows up on the skin graph and other side of my chest near my collier bone. It wasn't as bad as some others I know who have been through radiation and for this I was grateful but I have learned that my journey is my journey and to me this burn was difficult to deal with and during a time when I was almost tapped out physically it really seemed like a huge mountain to deal with.
The other side effects I had during radiation was skin peeling on my hands and feet. This is from the chemotherapy.
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| This looks better then it does in person also. As long as I keep lotion on my feet they look more like this. Days I don't do lotion like I should they peel allot more. |
On top of the skin peeling on my feet at the end of each treatment (a two week time span) my feet would feel like needles were jabbing through my feet every time I walked. Luckily, My oncologist asked me if I was taking any vitamins. Sure enough I was, because my plastic surgeon said it would help aid in the skin graph healing process. Well it turns out that this was counter acting with the chemotherapy medication and in turn causing to much folic acid to build up causing the needle pain. Once I figured this out and cut out the vitamin's my feet felt much better.
I also developed staph. Apparently it was just a mild form and antibiotics got rid of it. I didn't even feel it. My radiation oncologist found it and sent me to a dermatologist at OHSU. In fear that it may be a skin cancer. So glad it was just staph and easily treated. I did learn some interesting information from this dermatologist that I think is important to share with all of you.
When I first found the cancer spot in my breast it felt like a round ball and was really painful. I have been looking for the right word to describe what I felt because it wasn't a "lump" it was more of a ball. This is because, as I have said before inflammatory Breast Cancer is a little different then other breast cancers and sits in the skin not the ducts. The dermatologist gave me the "ball" word. He said that if you are dealing with a cancer in the skin it will feel like a ball that sort of moves. It's not a lump feeling. Please just be aware of this when doings self exams or looking at any thing out of the normal on your body. Men need to know this also. If they feel something on them or there spouse that is either a lump or a ball that has not been there before PLEASE have it looked at! Cancers are not always a lump and a ball doesn't mean benign.
I finished my last week of radiation and felt like I wasn't sure what to do. My last treatment I had the worst anxiety. Unsure of what was to come. I was done. Done with treatment, besides my chemotherapy medication and a lupron(?)shot which deals with hormones and keeping them from spiking, I was finished. I had made it. 9 months of my life just done. I wasn't and am still not sure what to do with that. You go from having a doctors appointment everyday to having one, maybe, every 3 weeks. You deal with the emotions of surviving but being so incredibly scared everyday. I'm trying to get back to life and many days I am successful but it's always a challenge.
When I was diagnosed and during my time in the hospital I really felt like my brain was so loud. I couldn't take in much more stimulus. I thought that would be over once treatment ended and I was officially deemed cancer free but it hasn't. My mind is still so loud. Anything extra thrown at me is a lot to process and sometimes I can't even process's it. I just have to leave it alone and come back to it.
People are expecting me to be fine now. To be who I use to be, but I am not who I use to be. You can't come out of a storm unchanged. Even if its just raining you still walk in wet, and needing to change your clothes. I feel like I just went through a tsunami in my head and I need to do more then change. I need to challenge myself everyday, I need to figure out what my purpose in this life is. You can't make it through the storm and not feel that you were made for bigger things.
Maybe I am meant to educated.......well I definitely know I was made to educate.......but maybe I was made to educate the world in a bigger way. I don't know and my goal now that I am through treatment is to figure this out.
So if you see me crying..... don't worry.....I AM BEYOND HAPPY TO BE ALIVE, I am also accepting where I am in life and that it's okay to be weak right now.......I am just crying because I have the ability to feel and feel deeper then I ever have.
