Finished radiation! September 2017

Going into radiation I had no idea it would be so hard and so painful for me. I knew there were chances that I may have some mouth pain and be very tired or have some redness on my face. But it is beyond what we expected it to be. I have had a very hard time eating. First it started with the mouth sores - the whole right side of my mouth: my cheek, my tongue and throat hurt. I don't have little sores, like a cold sore, it is a big white area of tissue that is 'burnt' by radiation. So to talk hurts, to eat hurts, to swallow hurts.  Eventually, my taste buds were affected and I can barely taste anything. And then, the last two weeks of radiation I had nausea and some vomiting to go along with it. By this point, I was barely eating anything. It hurt to eat, nothing tasted good because of the taste buds, and on top of that I was nauseous, so I was never hungry or liked the idea of even eating.  There were many days that I ate four bites of food and that was it.

As the weeks went on, I got more and more tired. Many times I took two naps a day and I was asleep very early. I had issues sleeping at night though, every two or so hours I would be awake and it took a little while to fall back to sleep. 

My face started getting pinker and pinker on the right side.  Like a sun burn. It also swelled up along with under my chin. My cheek is very warm to the touch, and I feel like every bone on the right side is throbbing. Luckily, the burn did not become raw or have any open sores besides a little spot in the back of my ear. 

This picture shows the redness, the
swelling and hairloss in back.

This was one of my last days and
as you can tell the swelling
was horrible.

After some trial and error, I figured out two things that helped my mouth feel better.  One was something they call 'magic mouthwash', which is a cocktail of medications that include lidocaine, I would swish it in my mouth and then spit it out. It would numb up my mouth for ten minutes or so. I did this before I would eat any meals -  and sometimes many times throughout eating just to get some food down!  At any point throughout the day when my mouth would really start to hurt me, maybe if I had talk to too much, I would use it then too. The other thing that helped me more than anything, was painkillers. For the past six weeks I have lived 24/7 off of painkillers. The painkillers have caused some digestive issues and it also affects my sleep. I can't wait to get off of those! Hopefully that will come soon!

The drive was not so bad! The more I did it, the quicker it seemed to be. Some days I'd go alone and come straight back. A lot of days I had friends and family come with. And a few times I stayed at my brother and his new wife's house. It all went really well and I was so lucky to have great weather, it only rained a few days.  I keep saying I need to make many trips back down to Marquette because there was so many good foods I had seen that I wanted but couldn't have!  It.  Was. Torture.  I swear, when my mouth is better, every lunch and dinner is gonna be a huge meal from a different place! I have so many recipes saved of food that look delicious too. I told my kids I am going to be making all kinds of things this winter! Haha, I have been deprived for SO long!! Food kind of puts a spell over me right now! -  Ohhh that looks so good! What are you eating today?!? Look at these desserts! Yum that smells so good! Ugh, I wish I was eating that!! 

It has been hard.  I am not gonna sugar coat it. I'd rather go through chemo again (minus the hair loss) then to do this radiation again. With chemo I would have one week of feeling horrible but then I would get a good week before having another bad week. With radiation, I had NO good week. Each week was horrible, and if anything, the next week was even worse then the week before. Talking was so hard along with eating. I had meltdowns, moments where I was mad at the world, times were I would just cry. I wanted to be knocked out and woke up sometime in October when it was over. Obviously that couldn't happen and all I could do was get through each day. I tried to not think about anything and just get through it. I would look at the end date and watch it get closer and closer.  And finally, that day came. 

My radiation techs were all amazing. I had 4 girls that worked with me everyday. They always asked how I was, what I had going on that day, who came with me, how my kids were.. I had two nurses that worked with me every Tuesday. I had my vitals taken and they made sure my health was good enough for radiation! And Dr. Baer was great. I really liked him and he was great at working with me and offered me any resolution he could possibly come up with to make things easier for me. 

I am 1 day out of radiation. I have so much relief that the drive to Marquette every day is over. I feel horrible still and I know I won't start to feel better for at least another week. I won't even feel like radiation is over for a few days, right now I feel like it's the weekend. I also had four days off over Labor day weekend so I feel like it will be day five before I actually feel like I am done with radiation.  It will be nice to work now and not have already drove to Marquette and back earlier in the day! I should have more energy for work, and possibly not need a nap before I go in. 

I am now six days out of radiation, and it's so nice to not be doing the drive! I feel like it finally kicked in that radiation is over and I can get back to normal life. It's so nice just going to work every day and not having been to Marquette already! I still have a very sore mouth. I honestly can't say anything in my mouth has improved at all yet. I do think my pink cheek and the swelling has gone down a little bit though!  I am still very tired, but I purposely put myself on my work schedule for the afternoon. That way, I can get the kids on the bus in the morning and then go back to sleep for a few hours. I am not sleeping any better yet either so going back to bed in the morning is a must!  I work anywhere between 2 and 5 hours a day. I try to aim for 3 days a week but I've actually been there 5 days the past two weeks! It is hard to say no to getting my client's in and I love being back with my girls and making money! I also have many things I want to do and places to go! And I need money for that! :)  I am really looking forward to the end of this week. I feel that by then, I should see some minor improvements on my mouth. Whether it's just that my taste buds are back, or maybe some of the soreness is gone. They said my second week out, is when I should start seeing a difference. 

Here we are on day 9 out of radiation. I am on my way to my cousins wedding in Chicago with my parents!  I am very happy to report that I have had some small improvements in my mouth! I can actually finish my morning bowl of malt-o-meal; before I gave up part way through because my mouth hurt too bad. I have to use my numbing meds before and during eating and now I usually don't have to do one or the other anymore. The pain is less then it was and I am thrilled!! Of course I wish I was 100% for being in Chicago this weekend, but I am happy to be where I am now and not where I was at the beginning of the week. I'll take it :)  I am still tired, but I know it will be some time before I feel energized. As long as I get my sleep, all is good with that.  And then my swelling is still there, but slowly keeps going down.  My pink skin is almost completely gone already!

I am now 15 days out and I expected to be feeling better then I do. I still have the mouth pain. Yes, it is better then it was a week ago, but I feel like not a lot has changed this past week with it. It still hurts every time I eat and it is just frustrating. I have read it usually takes 4 to 6 weeks to heal. I guess I was hopeful that it would happen sooner!  I am eating more then I was two weeks ago but I am still losing weight. I thought that adding more food in would help that but I am also more active now being at work many days a week... my taste buds are coming back! I can taste more salty things now. The sweet taste buds still aren't there. Hopefully in a few weeks things will all come together and get a bit easier. I still have fluid draining from my ear. I had an appointment today with my ENT and there is still so much swelling going on that it is impossible to see inside. I will go back again in another 2.5 weeks and hope the swelling has gone down so they can see what is going on. 

In less than two weeks we will be heading to Milwaukee for my next MRI. I believe that it is going to come back great. My doctors removed every bit of tumor there was and then I had the radiation as a precaution. So after this up and coming MRI, I should be back to having check-ups every now and then and that'll be it! My crazy 5 months will come to an end and I can move on with my life again! Best. Feeling. Ever.