I'm starting this one with a warning of shock, I don't know how else to describe the day. I also need to apologize if this one isn't as coherent as it should be. This whole brain radiation really gets your brain all weak and sometimes I don't know what my fingers are putting out. I have to say thank goodness for auto correct the last few weeks while texting, it pretty much drives my conversations.
So I guess it was the 5th, I know it was a Friday and I think that was the day. It was such a rough day and I had been telling people as nice as it was to say that word "remission" there was something heavy about it. Now I know what. I had been having some headaches before that after a while went away with some heat and pillow changes, so even though we had an MRI lined up that didn't work out and we decided not to reschedule because my symptoms went away. I realize now that was the right thing to do, however, we cannot live like that with the "if only we had". So anyway, long story short the headaches came back and with a vengeance. That Friday my brand new refrigerator was being worked on and it was so painful all the noises and anything that my mom had to come over so I could lay in my bedroom. As soon as the guy left we went to the hospital where everything went from there.
I won't say that I think the doctors did ANYTHING wrong at the hospital, I think they did the best they could with what was in front of them and this isn't something they deal with regularly so I have to give them credit. They were all very kind, compassionate, caring, and tried to help me in any way they could. That being said, there is a lot to be said for how things are delivered. We arrived at the hospital just before lunch and were seen pretty quickly. After a quick scan it was discovered that my cancer had in fact moved into my brain. This was causing the headaches and my brain was super irritated from the lesions on it. I should say that my specific breast cancer does go to the brain and it is just an area of the body that HER 2+ breast cancer can spread. There is a blood brain blocker (something like that) that prevents the chemotherapy from treating your brain however, so all of that great response to chemo in the rest of the body isn't allowed up in your brain because your brain sees the chemo as a toxin and will not allow it through, interesting huh? There was lots of scariness like it being there, "your brain is irritated and trying to force itself out of your head because of the irritation of the lesions" (YIKES?! WHAT?!) Yep, could have done without that little bit of information!!! So then we had to go from Wesley Long to Cone so that I could have an MRI done to get a better image and see exactly what we were dealing with. I wish I could say that it got better but it definitely did not. After hours more we were met by another doctor who had been in contact and working with the previous ER doctor. He came in to let us know that I in fact have 40-50 lesions on my brain and my scans were "incredible".
Incredible....
Let that sink in for a moment at the same time you hear 40-50 lesions.
Now I have not for one second thought this was it for me, nor given up, nor any of that. But when that was all said to me, I admittedly went there. And I have to tell you to hear this and your mom is there with you feeling all of the things you're feeling and plus some, this was probably a darker moment for me than the original experience of all of this. We went there and for a couple of hours. The room was hopeless, and all I could hear was 40-50 lesions and "incredible". It really quite pissed me off! I'm not some medical class case study, though maybe one day I will be. I am a person sitting here finding out this stuff right now and you just used the word "incredible"!!!! (Okay, I'm over it again.) But I did not think it was incredible. For the record.
After that was a blur, we were being admitted for the night, they started me on steroids right away and gave me a headache cocktail that I am so thankful for, and told me they were trying to reach the on call oncologist for the weekend and I would see them tomorrow some time. Meanwhile, my husband is home with our child, I don't know what to tell him but when you have to call him and tell him that he probably needs to call into work and then you have to tell him this over the phone, my heart broke into a million pieces all over again. He has certainly been such a positive trooper through all of this and tries to keep everyone up. Hearing him break for my situation was one of the lowest things I have ever had to do. There just is no good way. So my dad, husband and son all come up to the hospital to prepare to say goodnight. The sweet nugget brought a book for us to read, colored me a picture, and brought a stuffed animal for me to sleep with. <3 Have I told you how much he is my everything?!
So here's the silver lining, I'd been on the phone with my best friend Cat, crying and being a mess and then was talking to my best friend since Kinder, Elizabeth. Admittedly we were having that, you have been so good to me and the best friend and been there for everything in life and I'm sorry I wasn't as good a friend to you as you me, I was going on and on as we both cried hysterically into the phone. As I'm crying and loving to her, my door burst open, a man walks in, he looks at me and says "You want to go home?" In shock, I look up, abruptly ended our call and told her I'd call her back, and said, "excuse me?"
This man will forever be my God send. When I tell you there was only one thing that could have happened in this world at that moment, on that day, it was him. Dr. Ennover (I think that's the spelling but I will NEVER forget him.) The on call oncologist showed up at 9:30 that night, did NOT make me wait to see him until the next day, and came to let me go home. Of course my first question to him "Can I go to my son's football game in the morning?" Why not, he says?! My heart started beating again for the first time it felt like in hours. Again, he was a God send!
He talked with us a while about all the "scary" things that were said and completely understood. He said they don't see this every day, it's not their area so they are just going on what they have. He told me, yes there are lots of lesions but they aren't big masses. He wasn't worried and he tells his patients, when I worry, you can worry. You need to stop worrying, you are young and we can act aggressively. He did go on to say that he was shocked and impressed that aside from headaches that I had ZERO other issues. He did say that he was surprised I have not had a seizure and that I was functioning at a normal level for so many weeks, that just goes to show that we can do work with me. He told us he would be working, and already reached out, to radiation and they would have me set up and ready to get started on treatment Monday. They sure did too. He talked to me about his faith, how he felt about what I'm going through, how I can handle lots of stuff because my body seems to be fighting it really well and I'm going to be fine. I WILL NEVER FORGET HIM! He put us all at ease that night and I was so thankful for him. My parents, husband and son all left feeling like this isn't hopeless after all. Thankful, thankful, thankful, thankful, thankful.
Fast forward, I went to C's game and we ended up going to Charlotte for the weekend to celebrate a birthday for our cousin. It was so good to be with friends and family and I'm thankful for them as well. Sunday my oncologist called to check on me, so sweet, and we discussed what the plan was for Monday. Monday came and we began the plan. I was set for 14 treatments of whole brain radiation, I met with my oncologist and there was a mention of a special chemo pill that isn't easily accessible and costs LOTS of money, but she was going to try to get me approved (we were going to pay no matter what) to start it. This pill is supposed to be able to penetrate and work in the brain, YAY! There is a 65% chance of lifetime diarrhea (sorry if TMI) and a rash but for me beating cancer, who cares?! Within days I got a call that I had been approved and it was ready for pick up. Now I have to say this because YET AGAIN we have been so blessed in ways I cannot express. The doctor said it could run upwards of $1000 a month, this is for the rest of my life. When I called to see what we would need financially to cover the cost at pick up, "no cost". Wait, what?! Excuse me? No cost you said?! "No cost"........ Not only is it no cost to me, I guess I do have good insurance, it was over $6800 a month! WHAT?! Why are they making meds so expensive that people can't have them?!!! How are we trying to save people's lives if they don't have the access I do because I'm sure there are people who would use this if they could but can't afford it and I'm just so blessed and thankful that my insurance covers chemo at 100%. I'm so frustrated about that for others I can't stand it but remain thankful that it's something we don't have to chose between.
So that leads to here. I feel all over the place right now with my thoughts but it's been several weeks and it was a lot! I had very little time to get my life together after that Friday and pull myself back up and get my fight back. I did it fairly quickly, seriously days, and was back in fight mode by the next week. I've been positive as ever, I've been fighting like hell, and not a day goes by that I'm not thankful for that doctor that night, the team over the weekend getting me started so quickly, and the radiation I receive every day to help me fight this. OH! And those pills, which I have luckily had no reaction to!
Now radiation of the whole brain has been a whole other beast and quite an interesting feeling. I'm constantly tired, my body is so weak it takes me time to think about moving and getting up before I can actually do it. I'm not sick though, so I will take the tired, I will get my energy back so it's just temporary. I do a little bit of something and lay down because that's all I can do but that's okay. I'm here, I'm fighting, and I'm doing the best I can. I don't feel sorry for me, not for a second, I feel thankful. Thankful I can fight, thankful for the rest of my health like the doctor said, thankful for the medicine, radiation, insurance, lots of things people don't have that would make this something darn near impossible to do. I can't for one second imagine having to go through this and worry about all of the stuff that I probably should be that we don't have to. THANKFUL! I have two treatments left, Tuesday will be my last one, and then the waiting. 6 weeks waiting before we go for a scan to see how things played out. I pray every day, the entire 5 minutes on the table that the radiation is getting in there and killing every last spec of cancer in my brain and then the meds will continue to fight it and keep it from coming back. That's where my focus is. And you know what, I'd do this 50 times again and again to be victorious every time. I want to use my story and my attitude, and whatever else I've got to show the world it can be done and I'm going to do it. I'm fighting like hell and will never give up. There are options, I have an amazingly supportive family who is willing to move heaven and earth to help me do so and so I'm never going to be counted out. It will NOT ever be me! So there you have it. Pray for my complete brain healing every day, send all the positives you have my way, always keep it in your head that if anyone can do this, it's me, and don't ever for a single second let it in your thoughts that I can't because I can! I will! I am! Love to you all.
No comments:
Post a Comment