A matter of perspective 

Today is a rough day. My radiated area is very painful (thank you for pain medicine) and I don’t feel great. I’m a little nauseous and a bit light headed so I’ve spent a lot of today sleeping. It’s hard to be in a “funk” but it happens to all of us. I just keep reminding myself I’m almost done with this part.

As my boys nap and I settled in to sleep myself, I remembered that I had my blood work done this week. My normal blood work comes back within minutes but my oncologist also runs tumor markers, which take a few days. I debated on whether or not to pull up the results online and decided I wanted to know where they are. Oh my, I am glad I did.

My oncologist runs 2 tumor marker tests, one of which is called a CEA. It is an indicator of metastatic disease.  Last September, I had cancer but it wasn’t widespread. My CEA was 0.9. Anything under 3 is normal. In May, I was at 2.7; higher but still normal. On July 11, the day of my biopsies, my CEA was 13.1 – yikes. Higher than 3 – something isn’t right. I started Xeloda on July 27. On August 10, my CEA was 26.5 – double yikes. Way high and I was on Xeloda…first cycle, but scary nonetheless. I didn’t give it another thought because I knew I was just starting Xeloda and needed to give it time.

So my heart raced as I pulled up the results today. Although I know I can’t change the number, it’s scary to see it for the first time.

On September 6, my CEA was 7.9.

I can’t even type that without crying. 7.9. You read that right.

Yes, it’s still above 3. But I literally started my 3rd cycle of Xeloda yesterday. And my number dropped that significantly in a month’s time. A month!

So today, I am reminding myself about perspective. A year ago this time, I was doing IV chemo and was down for a week at a time. A month ago, I hadn’t started radiation and my tumor markers were up. Today, the side effects suck but radiation is almost over – almost!  The days are sometimes long but the weeks fly by. I will be healing from radiation in no time and only doing Xeloda. I’ll continue on Xeloda for as long as it works – and we pray that those numbers drop and stay dropped!

I cry today because I am so incredibly grateful for those numbers. To say how blessed I am would be an understatement. The fear of the unknown is a scary thing but those numbers don’t lie. It’s working, my friends. It’s working.

And it’s worth all of the side effects to be here today! 💚

Slime?!

I’m talking about radiation in a bit of detail today so if you don’t want to hear the nitty gritty, feel free to skip this post.  🙂

A few years after Ghostbusters came out, I became obsessed with it. I love everything about the movie but my absolute favorite was the Stay Puft Marshmallow Man. I would watch the entire movie just to see him at the end. I had a large not-so-stuffed version of him that I played with regularly…he was not so white by the time I was done playing with him! I wonder what happened to him?

My other favorite scene – and by favorite I mean love to hate scene – is the ghost in the library. They initially find the card catalog with slime all over one of the drawers and take it back for analysis. I grew up going to the library regularly (pre-internet!) and the setup brings back so many memories, minus the slime of course. The Ghostbusters eventually find Slimer in the hotel – and get slimed in the meantime. It cracks me up to watch, actually. This is totally one of my favorite movies…and I must go watch it again now.

Anyway, I didn’t receive radiation treatment yesterday. I was on the table for about 45 minutes and for some reason, we couldn’t get me lined up properly. Usually, the technicians line me up first, take pictures, then apply the bolus, take more pictures and treat. It took about 30 minutes and some up & downs to line me up before the initial pictures and after the bolus was applied, I still wasn’t perfect. I am grateful for their diligence in ensuring perfection. Eventually the doctor came in and chatted with me. Although she could treat me, I had already been on the table for 45 minutes and they needed to start over, meaning it would be at least another 45 minutes. Frankly, I had never been in so much pain during radiation before so I was grateful to get off the table.

My appointment is early morning, which I am very happy about. I lather up all day but I can’t apply any lotions 4 hours prior to treatment. Before bed, I cover myself with my layers then shower in the morning and wash everything off. My skin is incredibly dry afterwards, especially in the radiated area. Since my skin is bright red and peeling, it hurts something fierce…particularly in the morning because everything is so incredibly dry. When I had radiation to my left side, it was painful for sure but since I had my lymph nodes removed on the left, a lot of the feeling in my armpit was (is) gone. On my right and chest however, I have a lot more feeling so this go around is more painful and quite different. Plus they are hitting me at 25% stronger than my left side because of the metastases. The pain has been getting a little worse each day but it snuck up on me yesterday and I was barely able to lift my right arm for radiation. I have pain medicine but it’s not something I take before radiation because I drive myself.

The bolus is taped to me each day and I am typically taped to the table. This week, the technicians have been careful because of my skin beginning to peel. When the doctor and technicians attempted to take my bolus off yesterday, my skin decided to go with it. It didn’t feel awesome and thankfully they had already avoided my armpit entirely. It took them probably 5 minutes and a lot of apologies to get the bolus off. I smiled through it and talked to them about what to do going forward to focus on something other than the pain. No more of that bolus – or tape – for me!

Needless to say, the doctor was insistent on my getting a ride from now on and making sure I take extra pain medicine just before every treatment. So today, I did just that. The old bolus was tossed yesterday and today we used a different kind. I had to touch it, of course, and the first thing I thought of was Slimer! Remember the slime you had as kids, I think it was from Nickelodeon? I would compare it to that too. That is literally what it felt like. It used to be green but is now hot pink!

The technicians took the “slime” in powder form, mixed it with cold water and shook it up in a bag for 4 – 5 minutes. The areas that they were radiating were covered in plastic wrap, then the doctor and one of the technicians took the slime and created a bolus on me. The process was labor intensive for them and my neck & hairline were slightly covered at the end but you can’t help but laugh at that! The bolus they created was used to treat me and then they wrapped it all up in more plastic wrap so that it stays moist for my remaining treatments. It was an interesting experience today! Also, thanks to the pain medicine ahead of time it barely hurt at all – whew!

Today was treatment 17 of 20 – almost done! Then we will talk about when to do the 5 boost treatments; right away or wait? I have upcoming travel (Sloan, Emory and a wedding!) so we will have to talk through the pros and cons of that. In the meantime, I am learning to stay on top of my pain medicine (I try to power through it but this is just not something to power through anymore) and remember that the end is in sight!

Now, I am off to see where I can watch Ghostbusters for free….Happy Friday, friends!!

My side effects

I’m almost done with my second cycle of chemo pills and today was day 12 of 20 (maybe 25) radiation treatments. So far, I have been incredibly tired but doing well. I knew to anticipate side effects and they have finally begun. 🙂

I woke up early Saturday to some intense heartburn and a sore throat. I knew from the last round of radiation that it was only a matter of time before it started again so I had started with one of my prior heartburn medicines but switched to taking both now. I also use the liquid Carafe every day in the hopes of it helping as well. If it gets bad, I have the “Magic Mouthwash” to numb my throat so I can eat (yeah…it hurts that bad). I know it’s a result of the radiation so at least there is an end of it in sight!

This morning I woke up and felt a horrible pain in the soles of my feet. I would equate it to walking on needles – it hurt! Thankfully, I lotioned up my feet, added socks and slippers to help. Walking barefoot was definitely not an option! The slippers and cushions of my shoes helped massively today so it made walking much easier. One of the biggest side effects of the Xeloda (chemo pill) is hand and foot syndrome, so it sounds like I have the foot part. No sores, just redness. A quick text to my oncologist’s nurse and she confirmed that it would get better on my week off – which starts Friday! I see my oncologist next week so I see if he has any tips or tricks.

My skin is turning into a sunburn, though it is happening later than expected! Today my armpit started peeling as well so I am moving past the lotioning only and using the lotion, silvadene cream and xeroform pads to keep my skin hydrated and bandaged up. I can’t apply anything before radiation so the early morning appointment works well. The peeling doesn’t feel awesome but I know it is a necessary part of the process. I am curious, for anyone who has gone through radiation treatment before, what was your process? I’m wondering if there is a better way to bandage myself up or something different that I should be using. 🙂

My headaches are starting to get better! I’ve been fighting some pretty intense headaches for the last week (since the Gamma Knife) but today they have lessened significantly and for that, I am grateful.

I saw the radiation oncologist yesterday for my weekly appointment. Everything looks great!!! My skin looks better than expected two weeks in (the nurse even commented about how beautiful my skin is). The cancer on my skin is almost entirely gone and my lymph nodes are “melting away”!

So despite my side effects, I can’t help but SMILE! Everything that I am doing right now appears to be working against this horrible disease. I will continue to fight for NED!!! And from the sounds of it, I have to smile at the possibility!!!

3 weeks post radiation!

Today I headed back to the place that was like a second home for 6 weeks straight. I had my (almost) 3 week post radiation checkup and it went quite well!

The radiation oncologist was beyond excited about how well my skin has healed. She couldn’t stress enough how nice it looks in such a short amount of time. It is so awesome to hear that!!  I have instructions to continue moisturizing twice a day until well after reconstruction but that is a small task after radiation so I don’t mind.

And the next exciting update? My follow up appointment is in January! That’s right, I don’t need to see her again until after reconstruction. As much as I love her as a doctor, I am in no hurry to head back there.  😄

This is a small win but a wonderful one nonetheless! Happy Tuesday, friends!

And I’m done.

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Six weeks is a long time. A lot can happen in that time. They say it takes 3 weeks for a habit to form so imagine the changes that can happen in 6 weeks time.

The last six weeks for me have been filled with almost daily trips to radiation. At arrival, I say hello to the receptionist and head back to the women’s changing room. I grab a gown from the cabinet, remove my top and tie it around my neck and waist. It’s usually chilly so I sit as close to the oscillating heater as I can. Well, until a hot flash hits.  I wait for the technicians to come get me and chat with the ladies waiting beside me while catching up on our HGTV.  Sometimes the wait is quick and other times it can take a while.

Once called, I lay down on a hard table lined with a sheet, untie the top of my gown and remove my arms from it. My head fits into the pillow, turned to the right. My arms rest above my head in their spots on the pillow. The pillow is actually hard to hold me in place, not like a typical pillow.  A soft, triangular pillow is placed under my knees for comfort. If I’m cold, a warm blanket is placed on my legs and arms.

The technicians work their magic and ensure that I am placed perfectly for treatment. We chat and joke while they work.  The first 25 treatments were 5 sets each day plus films. The last 5 were each 1 25ish seconds of treatment. When ready, the technicians leave the room to watch me on cameras and work the machine.  The “Beam Ready” light clicks on then switches to the “Beam On” light and a buzzing sound can be heard while the radiation occurs.  Today, as usual, while the buzzing sound was heard in my ears, I silently counted the seconds that passed. When I hit 25, the buzzing stopped, the light switched off and the technicians returned.

Only this time, the light switched off for the last time and I wiped tears from my eyes.  There were big hugs from the technicians, a certificate of completion and I was done.  I quickly changed, walked out of the radiation center and returned to my car.  I’m done.  Radiation is over and I survived.

My skin should begin healing over the next week. Although it still looks rough in a few places, there is drastic improvement in the areas that haven’t been radiated since last Monday.  This part of the journey seemed so far away initially and now it’s over.

Here’s to new beginnings, the end of an era and to new growth.

Off we go!

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Anytime we travel, we always end up going to bed way too late the night before preparing and yet we wake up bright & early ready to get moving. The excitement immediately kicks in and caffeine is almost unnecessary because my mind starts working immediately to accomplish the last minute tasks and get out the door on time.

I was asked to come in early today for my final treatment because the machine will be down from 8am – 845am. I had the option to go after but I didn’t want to risk not having treatment if the machine needed more time. So today we are up extra early and starting our day before the sun has fully risen.  It is the end of this journey and the beginning of something great that is rising on the horizon.

Jacob wasn’t really feeling the excitement this morning but Joe & I are giddy with it. And thanks to my sweet friend, my necklace is on point for today! (That’s a saying, right?)  Oh, and the Phoenix Alex & Ani bracelet my husband spotted (the last in stock) and surprised me with!

Happy Wednesday, friends! What new journey are you starting?

25!

My 25th birthday was a big deal for me. I felt as though it was a milestone birthday like turning 18 or 21 except for me it brought a lot of questions. What am I doing with my life? What have I accomplished? What do I want to accomplish?  A lot of big questions that I didn’t have the answer to – turning 25 created a little chaos in my brain.

My brain chaos hasn’t gotten much better over the years but I am learning to embrace birthdays as a reminder that I am alive, well and able to continue working towards whatever it is my heart desires. What better reason to celebrate?

Speaking of celebrate…today’s 25 is another reason to celebrate. I am officially done with my 25 regular radiation treatments! I know, I know, I can’t believe it either. 5 weeks down and just 1 to go – wahoo!

Of course, my final regular treatment couldn’t go off without a hitch.  😉  For whatever reason, a smidgen (my radiation oncologist’s word) of my heart kept showing up in the films and the technicians were having a hard time aligning me (one little thing can throw it all off!). An hour later, a visit from the doctor to help and some numb arms and my heart was safely out of the way to begin treatment!  Yeah!  Next, five boost treatments aimed at my tumor area and scar tissue and I’m all done.  So close!

My skin continues to look a little worse every day. My entire left side, including my chest, armpit, neckline and side, are all bright red like a horrible sunburn and peeling.  It itches and hurts but the creams help as much as they can.  While aligning me for treatment today, one of the technicians suggested I stop down and see the nurse at the doctor’s station because of the changes in my skin from Friday. Yikes.  So I did and the nurse gave me some special gauze to help keep the area under my armpit and around where my tumor was hydrated.  So 4 creams, special gauze and regular gauze now…all wrapped up with an ace bandage!  I feel sorta like a walking mummy with my chest all wrapped up like this.

Anyway, 25 down! Tomorrow I start on a different machine and after a short visit of 5 treatments I’ll be done. That is definitely something to celebrate!