Radiation Progress - August 2017

Radiation has started! I have done three weeks of it now. I wasn't looking forward to doing that drive everyday, but my Mom made a comment early on that stuck with me. She said that I need to think of this as my job. When I look at it that way, it isn't so bad. This is 5 hours out of my day. I need to go down, get the radiation and then I can come home, or stay and get food, do some errands...whatever it is that I feel like doing that day. I've gotten to know every corner and every little town along the way. If anything, the drive seem to be getting shorter and shorter as I get more familiar with it. 

This week I have had partners but prior to now I was going alone. It was peaceful, I'd listen to music and cruise. I usually get a coffee, sometimes before, but usually when I get down there and then head straight to radiation. I'm fine with doing the drive alone, I am more worried about having someone to watch the kids then I am about having a partner in the car. I take Shay with me usually once a week and she was fine with it, we turn it into a girls day with lunch and a little shopping.  She doesn't like the drive so she wouldn't want to do it everyday! Rease is now old enough to stay at home alone but Shay is not. So friends and family have been great at helping out with her!

Once I am done with radiation for the day,  I usually will grab food, maybe run into a store and head home. I have not spent a full day down there yet. I am getting tired by this point and I just want to get back to the kids. Rease now has football so I need to get back to get him there and I am also working a tiny bit and need to be back for that.  Plus I know I'll be making the same trip down the next day! So I have plenty of opportunities to check places out. If I can't get somewhere one day, I can always go the next. 

When I pull up to the hospital I park in this lot that has designated parking spots for us in radiation. Then all I need to do is cross the street, go inside, take a left and walk through the radiation oncology doors. It's very convenient that they have easy access to this unit. It would definitely be more of a pain to walk into the hospital and go to a different floor. 

I have a little pass that sits in my
car for proof of getting radiation.

The fancy doors to enter the radiation unit.

Once in there, I walk down the hall and take a left into the waiting room. In the waiting room is about 8 chairs, some coffee and a bathroom with 2 changing rooms.  

I change into a gown right away. I can leave my bottoms on but my top half comes off because it would get in the way of the mask.  Then I go sit in one of the chairs and wait my turn! Sometimes they call me back right on time, and the longest I've waited is only 15 minutes. 

While waiting I have gotten to know quite a few of the other patients. I have yet to find one close in age to me though.. one is a sweet lady from Mohawk who is fighting uterine cancer. She stays in the hospitality rooms at the hospital with her husband. She only has two days left! Another is a man who also has a brain tumor. He has a glioblastoma.. the kind my Aunt had. He lives in Harvey and his wife or one of his daughters bring him. He only has 5 days left! There are a few other people I have gotten to know a little bit but these two families I see most days. It all depends on if our times match up! 

I had preferred a 10:30 appt so I can be back home at a decent time and still take the kids to Twin Lakes or something. But after doing that time, I am exhausted and need to come home and take a nap before going anywhere.  For 10:30 I need to be up at 7 something, to leave about 10 minutes after 8. (Construction has held me up a few times! Don't want to risk it.) So I had asked if we could do around 11:30 next week. That way I don't need to wake until 8 something and that should help a bit! My sleep has been very off. I am tired, and fall asleep easily at night even after taking a nap, but I wake up many times during the night. I'd love a solid 5 or 6 hrs stretch...

When it is my turn for radiation, I get called back by one of the nurses. We chat about our day as we walk to the radiation room (I see the same 4 girls every day), one of them grabs a warm blanket for me, another is setting up the table for me. I have a chair with a mirror and I set my purse on it and then I make sure I have my headband off and no earrings or a necklace on. 

Next I go lay on the table. There is a little clear plastic holder for my head. I have a pad and pillow that go under my legs, I make sure that I do not have my legs crossed, and then the warm blanket goes on me. We pull the gown off my shoulders and it rests across my chest. One of the girls give me this little rolled up piece of gauze (that they make every day), it goes in my mouth on the right side to help protect my teeth. 

The table I lay on and the
radiation machine.

Now it is time for the mask to go on. They slowly bring it down onto my face, making sure they have it lined up right. Once it is on, they snap it into place along the edges of the table I am laying on. If we are lined up right, the mask is snug but does not hurt. If my position is a little off, my right eyebrow, that is titanium, gets sore from being pushed on.  After this the girls make sure the table is in the right position, they call out a few numbers, and then leave the room. Right outside the door is a bunch of computers and a camera so they can watch and hear everything going on in the room I am in. I want to say the next 4 minutes, the machine is lining up to where it is going to be that day. Usually my table moves a bit too. Then I hear a little beep, and that is when radiation starts. The other day I counted how long it is:  58 seconds. That is it.  I drive 2 hrs, for a minute of radiation. Shortly after the radiation is over the girls come back in, take the mask off, take the gauze that was in my mouth and lower the table. I hop off, grab my things and we walk back to the waiting room. 

I had the girls take a picture of me once
the mask is on. 

I am done with radiation for that day and I'll see them the next!  I go back into the changing room, get the gown off, put my headband on and head out. I say goodbye to all of my new friends in the waiting room. 

When I get in my car I put on a tinted moisturizer that has spf 30 in it. I have to be super careful in the sun. I am usually starving at this point so I go find some food. 

The side affects I will deal with from radiation are a sore mouth, tiredness and my skin color on the right side of my face will change. Sometimes to a tan color but mostly people end up with a bright red sunburn look. I just purchased a makeup for my face that people use to cover tattoos up, so I know it'll cover up the bright red skin once I have it! I figured I am better off by being prepared. 

Now that I'm three weeks in I am feeling the side affects. Like I said earlier, I have been napping everyday but still fall asleep easily at bed time. I am to the point that I can not make it through the day without a nap. And I am getting tired earlier and earlier in the day. By about 2 o'clock when I am usually heading home from Marquette is when it starts to kick in. Before I could at least make it back before getting tired. 

My skin is slightly pinker on the right side then the other side is. It isn't very obvious yet but I can tell it is definitely changing. Some people end up with an actual burn look that peels. I hope my poor face doesn't have to go through that. I am starting to swell on the right side too. I usually have marks on that side of my face from my mask and I didn't have that the first two weeks. And under my chin, there is a lot of swelling going on too. 

The mouth sores - I started having problems with this way too soon. They say it shouldn't kick in until about 3 weeks into radiation, but I started having problems a week and a half into it. That is a bad sign because it can get pretty bad if that is the case.  The top of my throat on the right side feels like I have strep throat, and my tongue and right cheek are super painful too. I have a white area on the right side of my tongue and my right cheek. It is damaged tissue from radiation. It hurts to swallow, hurts to eat any food, and it even hurts to talk. Some days are worse than others. It depends on how much I am talking if I am on top of taking my meds.   The other Sunday it hurt so bad that I went into the doctors and got a rinse with lidocaine in it. It helps numb it, but really only masks the pain for maybe 20 minutes. That Monday morning I was so miserable that I decided to try a painkiller and see if it helped at all.  It actually gave me more of a relief then anything else had! It only helped for about an hour, but that is better then anything.

Every Tuesday I meet with my radiation oncologist and I told him about the pain and he said I was doing everything right.  Which includes using a special toothpaste from the pharmacy that my dentist prescribed. A rinse of salt, baking soda and water. (This rinse helps clean your mouth after eating anything and can help keep the sores away, You use it MANY times a day.)  And then I have the numbing mouth rinse too.  There really isn't anything more he can do for me. He wrote me a prescription for more painkillers and that is all that can be done. 

The three things that come
everywhere with me.

Eating is really important while going through radiation. Nutrition is what helps heal the mouth sores, keeps you strong and keeps you from getting sick and run down during this process. While getting radiation your metabolism can speed up by 15%.  So I am having a difficult time right now because my mouth hurts so bad and I can hardly eat anything. Here is a what a few days of eating looks like for me right now: one day was 5 bites of eggs and a bowl of creamy soup, another day was soup and a nutritional shake. I then figured out that about 45min after taking the painkiller is the best time for me to eat and I now have been able to ear a bit more -  the insides of a roll, cheese quesadilla cut up REALLY small, mashed potatoes, mac n cheese. Nothing can be very hot and has to have zero spice in it. It can not be acidic either, so nothing with tomatoes.  And nothing chunky or hard. I am slowly figuring out new foods though.

I was able to eat these, but only
half the pie, and a third of the
noodles! That took about 45 min
too. 

Some people end up with mouth sores so bad that they need a feeding tube. I really hope mine does not get to that point. I am trying to stay positive about this but having a sore mouth is really hard to deal with! If I knew it was only going to be a few days that I had this, that is one thing. But it can last through radiation and up the about 6 weeks AFTER... the only time I don't think about it is if I am by myself and not eating! Because every time I talk it hurts. And every time I eat it hurts. I can't even talk normal anymore because any movement of my tongue, hurts. 

Two weeks ago was a crazy week for me, I don't know how I managed to get through it! Not only did I drive to Marquette everyday for radiation, but my daughter had her birthday and birthday party, my brother got married  (that included a rehearsal dinner, doing wedding hair and wedding nails), I had two doctors appointments, my car got hit (not bad, it is still drivable..) and one of my best friends had a serious medical condition that almost took her life.  I don't know how I made it through that week. Sometimes I wonder if I am a robot just doing what I need to do?! You'd think I would have had a breakdown at some point. But I guess I had zero time for that! Lol. 

My gorgeous family at Kent and Alyssa's wedding.

This week is much more calm. I have friends and family coming with me to MQT most days, no other doc appointments, my friend is recovering at home, no longer in the hospital and I have yet to call my insurance for my car but I will get around to that soon.  I am grateful that my painful mouth did not kick in until the end of that crazy week! It would have been much more difficult to get through it.    

I am starting to go into work a little bit here and there. I had a close client of mine get married and I promised her I would still be able to do her hair for her wedding. The weekend after that was my brothers wedding and I did a lot of hair for that too.  I have a few more weekends of wedding hair.  It has been a good way for me to get used to being in the salon again. I am going to start working about two days a week for a few hours and then as the weeks go on, I will start to add more. 

I don't want to push myself since I am in radiation and if anything I am going to be getting more tired and miserable as time goes on. But there is a part of me that feels like I need to get back to work some too, plus I am running low on money so that adds to the decision to work! Lol. I am trying to find a balance between it all. I also want to enjoy these last few weeks with the kids before school starts. 

So right now, I am just chugging along, trying to make it through everything . The radiation is definitely taking more of a toll on me then I thought it would. I hadn't experienced this kind of radiation before and it is a lot harder then I expected it to be. For me, I think it is almost worse then chemo was. My nurses have told me though, that this radiation, is one of the worst ones to have. The side affects are very harsh. Yup! I can definitely say I agree with that!

But this too doesn't last forever. I keep telling myself that. I am almost half way though, and I just need to keep going. 16 of my 35 days are done. If this is what I need to do to keep the cancer from coming back, then I am going to do it.