Tired Tuesday

Our sweet boy has not been sleeping well. I think it’s his second molars making their way in, causing lots of lost sleep at night and two very tired parents. Last night, he was awake a large portion of the night and so were we. Needless to say, it was a rough morning in our house.  At least Jacob woke up happy!

I had an early morning appointment before radiation to be fitted for a lymphadema sleeve. Since I had lymph nodes removed, I am at risk for lymphadema in my left arm and hand going forward. I have to be careful not to injure my arm and I can’t wear anything tight like a watch (or fitbit, oops!) Or I could have severe swelling that, from what I understand, can be quite painful.  So I was fitted for a sleeve that fits pretty snug and am supposed to wear it anytime I’m sitting at a desk or going for a long car ride or flying.

So today, I arrived at the center where I receive radiation treatment and headed next door to the “spa” in the hospital. The woman who helped me was kind and very knowledgeable. She measured me and shared what options she had in stock and that I could order items as well. I asked if I could have more than one so I could have one clean at all times and that’s when I learned that my insurance covers them in full for this year!

Wait, what? Aren’t you out of network? I mean, I had to drive over 2 hours to a post mastectomy supply store for it to be covered in full (well, fullish with all of their up charges).  Well, apparently not. Since they are part of the hospital, their billing is through the hospital and they are completely in network. Say what?!  I am sure you can imagine my excitement at this! Well then you can especially imagine my excitement that she offered to refit me for the post mastectomy bras – this time with styles that are more comfortable and fit better under every day clothing (like a tank top).  And they will be covered under insurance.  Yay!!  I was a happy lady and it wasn’t even 9am.

Next, I headed to radiation and then saw my radiation oncologist for my weekly checkup.  I have to start using a burn cream where my skin is peeling so I’m up to 4 creams/lotions 2 – 3 times a day now.  I have to put a gauze over it too, which I needed Joe’s help with to do since it’s mostly in and around my armpit area.  Hopefully the cream will help and will prevent any more open wounds.

I did confirm today that I will need the 5 booster treatments after my next 4 regular treatments (wait, this means I’m in the single digits now, wahoo!!). The booster is increased radiation aimed specifically at my scar tissue to help prevent the chance of recurrence in that area.  My skin should start to heal about two weeks after radiation ends (it lags a bit) and then the scar tissue will worsen a little before it gets better. So hopefully this time next month I won’t have quite as many creams to use!

By the time I made it to work, I was pretty tired from the morning’s activities but I was pleasantly surprised with a bouquet of flowers and a sweet card that my husband brought in for me – just because.  More tears!

I woke up today wondering how I would get through the day being so exhausted and the day has been filled with blessings.  If that can’t make for a great day, I’m not sure what can.  💚💚💚

The worst part of today

Today was exhausting. It wasn’t so much the going back to work part as it was having a jam packed day starting at 6am and ending now.  When I came home from work, I immediately changed into comfy clothes and removed my bra. I instantly felt a sense of relief and thought to myself the worst part of today was having to wear that bra all day!  I have always felt better removing a bra at the end of the day but have enjoyed not wearing one recently, except for a few occasions. So today was a long day, paired with a silicone implant and irritated skin, and I was ready to take it off the moment that I put it on.

But then tonight, I had my standard routine of showering before bed and as I applied my regimen of Miaderm, Calendula Oil and a steroid cream to my radiated skin, I noticed something odd on my fingers. I looked closer and noticed it was dead skin. Examining my skin further, I saw that the area in my armpit was starting to peel. This is to be expected, as far as I understand, but it took me by surprise. Aside from some redness, itching and aching I haven’t had significant changes from the radiation yet (we’ll set aside the fatigue for now).  As I stood there staring for a moment, I was reminded about everything that my body is experiencing right now – the trauma that it continues to go through despite me trying to begin a “new norm” today.   Setting aside the urge to pick at it further (yes, I am one of those), I began to wonder about what the next two weeks of radiation will do to my skin.  And one of the hardest parts about this moment, is that I didn’t really feel it.

Have you ever had a horrible sunburn? One that aches for days and itches before peeling but also hurts to itch? I’ve had a few of those myself. Since surgery, I haven’t had feeling in certain areas, including my left armpit.  So seeing the peeling today without feeling the pain of the “sunburn” beforehand was a bit of a surprise. Maybe it shouldn’t have been. Maybe I thought it wouldn’t start just yet. Maybe I have just been going through the motions of radiation, hoping for the best. Either way, as I looked at it I thought, maybe this is the hardest part of today?

Then I heard a giggle and looked down to see Jacob brushing his hair with a toothbrush. I couldn’t help but laugh! And all is right in the world, peeling skin or not.  💗

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HALFWAY! + 3

Can you believe I’m over halfway done with radiation treatment?! Me neither! Time sure does move fast.  The fatigue is taking a toll on me but I mostly feel good. I’m tired but have a hard time sleeping sometimes, especially if I’m just trying to nap.  My skin is turning a nice shade of red now and it looks as though I have an oddly shaped sunburn across the area being radiated. It’s starting to itch too so the doctor prescribed a cream to help with that. So now it’s Miaderm mixed with calendula oil and topped with a steroid cream 2 -3 times a day.

Sometimes it hurts, mostly under my armpit area but that comes and goes so it isn’t too bad just yet.  The pain in my esophagus is finally under control, thanks to the medicine the doctor prescribed last week.  I accidentally skipped 2 doses over the weekend and the pain immediately came back so I’m grateful the medicine helps!

Aside from that, I’m anxious to be done, simply because I’m ready to move on from this part.  ☺

I hope you are all having a wonderful week and enjoying the change of season!

I did not miss you.

After my first aggressive chemo treatment, I had crazy heartburn. Antacid wouldn’t touch it and I was in pain so bad that I texted my nurse first thing Saturday morning to see what I could do combat it. Soon after that, I started taking two separate heartburn medications throughout treatment to keep it away. Despite those two medications, I had a lump in my throat for about a week after each treatment. It eventually went away but was rather annoying and made swallowing a bit difficult at times, especially if I took a big gulp of water. Once my aggressive treatment ended, so did my struggles with heartburn and I was super excited to stop taking any medication for it.

A few days ago, I started to have a similar lump in my throat, though it is more painful than before. It isn’t associated with any burning sensation that I would equate to “typical” heartburn, aside from the pain that sometimes feels like it radiates out a bit. I didn’t mention it to my radiation oncologist at first because I didn’t think it was related to radiation therapy and it wasn’t listed as a possible side effect. It’s been really started to bother me, so I decided to ask about it being from radiation.

I initially asked the technicians who treat me daily and they immediately suspected that it was heartburn from the treatment. So after treatment today, I stopped by the nurse’s station where my radiation oncologist is located (right down the hall, which is super convenient!) and after a quick chat, they suggested to try taking the heartburn medication again. If that doesn’t help, I can chat with the doctor some more.

I did not miss you, heartburn.

Hopefully the medications will help but in the meantime I’ll be trying out some of the tips and tricks suggested to help me before. Pickle juice, anyone?

 

New routine with 7 done!

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I suppose the universe heard me mention that my appointments take quite a bit of time because they’ve been under 30 minutes the last two days, including a doctor’s visit. I don’t mind the wait so much but it’s nice to be in and out so quickly. My technicians are always the same, unless one of them has a day off. Everyone is incredibly kind and patient too. They always seem to be smiling.

I’m getting used to the routine now and know what to expect each day. The receptionists know me so a simple hello is the only way I need to check-in. I head right to the changing room and swap out my shirt for a hospital robe. One of the technicians calls me in pretty quickly after I change and grabs me a warm blanket while I settle in on the table. The table is hard but there’s a sheet over it so it isn’t cold. I lay myself down and they put a triangular pillow under my legs to keep me comfortable. My arms rest in their usual place above my head and I am asked to hold my breath so they can place a small piece of wire tape on each of my sides. When I start treatment, this lets them know whether or not I am breathing in too much or too little. The red line needs to line up perfectly with the tape.

I’m offered a blanket for my arms too but I always decline. It’s incredibly chilly in that room but I am afraid of a hot flash during treatment…if my arms and legs are covered and a hot flash comes, yikes! My skin might actually melt. 😉 The technicians use the extra blanket to warm up my bolus while they leave the room and take my films. The machine moves around me and I’m asked over the intercom to hold my breath on and off.

Once the films are done, the technicians come in and place the bolus over my chest. It helps increase the radiation and basically acts as a layer of skin so that they can treat my actual skin. In order for the bolus to work properly and not have any air pockets between me and the bolus, it is taped in place. They must go through a ton of tape each day! Despite warming it, the bolus is usually still a little cold and it’s hard to sit still while they tape it on me because of the chill.

Next up is treatment. The technicians leave the room again and the machine moves into place. Sometimes they treat me from above first, other times they start under me. The treatment part is over pretty quickly. Once done, the bolus is removed and the technicians help me sit up and head out to get changed. I always lather up with lotion and drink a bottle of water before leaving.

One of the hardest parts of this new routine is the amount of time that I spend in my own head, especially on the treatment table. Even on a good day when the treatment is under 30 minutes, it’s still a while that I can’t move or talk much. It’s hard not to think about what is happening inside and what the radiation is doing to me. If only I could nap while on the table, that would help with the exhaustion that I feel already! 🙂

One week down!

Well, I have successfully completed one full week of radiation. I feel good so far, just incredibly tired. I wasn’t expecting the exhaustion to start so quickly so that’s been a bit challenging. I have a little pain under my arm pit but nothing crazy.  I’ll mention it to the radiation oncologist tomorrow during my weekly visit.

I’ve started using the Miaderm mixed when Calendula oil twice daily. I can’t put it on prior to radiation (within 4 hours) so I’ve gotten into the routine of showering at night, putting the lotion on before bed and then bringing it with me to radiation and putting it on immediately after treatment. So far this seems to be working well.

My appointments have varied in time each day based on what they had available at the time so I have had the opportunity to meet some incredible women in the waiting room over the last week. They have shared their stories, words of encouragement and what to expect after a few weeks of treatment. That’s been helpful and it’s wonderful to chat with so many strong women.

The machine has been “down” a few times over the 5 treatments so the appointments typically vary in length. I waited over an hour one day before being called in and the next my appointment was in and out in under 40 minutes. The radiation part is super fast but the positioning and the films each day take a while.  With the 45 minute drive each way and then the 40ish minutes for changing and treatment, I’m tired by the time I even arrive home.  Having people to chat with in the waiting area has been helpful so I don’t mind the wait. Things happen. 🙂

That being said, I think this is a great opportunity to listen to some books on tape…or streaming, I guess is the thing nowadays. Can anyone recommend a streaming service? I’m hoping for a free one but not sure if that’s a possibility or not. Thanks in advance!

1 week down, 5 more to go – yeah! Happy Monday folks!

Oh, so tired

Life continues to amaze and inspire me. The way one phone call, one conversation, one word, one smile or a seemingly random encounter can put together a stream of events that fall perfectly into place. Incredible, isn’t it? The way life works sometimes…it’s like the universe (or God!) is winking at you and saying: Just follow my lead.

So what’s stopping you from taking the lead and following the path that seems to be carved for you? What’s stopping you from following your dreams and making them a reality? Excuses? I need to stop making them.

I wrote today. A lot. I felt really great about it, actually. My day was spent going from one appointment to the next with a few minutes in between that I spent scribbling away in my notebook trying to make sense of my thoughts and organize them in a way that can be understood and flow nicely. I scratched out lines and wrote in the margins and crossed out a paragraph and skipped to a new page. It was a wonderful way to spend the time in between appointments and it felt productive…and wonderful.

I came home in the late afternoon after traveling around town for these appointments, which included radiation treatment number 3. I walked in and sat down to enjoy a bit more time to write…and then it hit me. Tired. Oh, so tired. My whole body suddenly felt exhausted. I decided to lay down and nap, which I did for a quick 30 minutes. I know radiation causes fatigue but I didn’t anticipate that it would happen so quickly. And maybe it didn’t, maybe I am just over tired and the running around to appointments today got the better of me. But my goodness, I am tired. It was a reminder to me that my body is still healing and still fighting. And sometimes it needs a break.

So, although I feel good about the writing that I did today, the rest will have to wait until tomorrow. For now, I will rest.