“My ‘noculars!”

I can’t stop looking at these pictures from school today – and I love my big hug before he headed there!

Jacob received his “noculars” as a Christmas gift from Grandma & Grandpa. They were a thoughtful gift to help Jacob find fish when out fishing. He absolutely loves them and hasn’t really put them down since Christmas. He likes to take them everywhere and will often bring them in the car and tell us what he sees through them, including mommy and daddy.

For the last week, Jacob has been asking to take them to school. Typically when he does this with a toy or book, we can talk him out of it because he doesn’t want to lose them at school. And we promise to bring them with us when we pick him up. With the binoculars though, he wouldn’t take no for an answer. He was so adamant that we asked the teachers if it was OK that he kept them with him. They happily agreed (oh gosh, I sure hope he is sharing!) and I don’t think he’s missed a single day of bringing them with him since.

He accidentally left them at school last night and was a bit distraught over not having them. When we explained that he would find them at daycare when he went, he was anxious to hop in the car and get there. I imagine he found them soon after arrival and didn’t take them off much afterwards. 

His school uploaded the pictures of him drawing on paper and then checking it out with his binoculars. I love it so much! They are helping him to embrace the use of his favorite toy and learn more about how he can use it. I love that he has such a wonderful imagination to go along with these binoculars and that his school helps him to foster that. I love that he loves a toy that has practical uses. I love that he enjoys his binoculars so much. I love everything about these pictures. 

I love that I see these pictures and it makes me take a step back in my own life. It’s easy to get caught in the thick of things and lost in the weeds. It’s hard to pull yourself out and find yourself & your purpose again. Feeling as badly as I have recently, I have been losing myself in those very weeds, focusing solely on the pain and discomfort. 

But there’s so much more to it. There’s all last week, which I am still not over emotionally. There is all of the incredible upcoming events and visits that are planned. There are the little things (that are actually quite big in the long run), that I want to incorporate into my everyday routine and have no excuse for why I keep pushing them out. There’s my purpose, my desire, that I want to focus on now, not later.

No, I can’t stop the way that I feel physically, but I can take a look through a different lens and see the things that I want to focus on. Things that I’ve been excited about but pushed aside because of the way that I have felt recently. 

It took Jacob and his noculars to remind me that I am in control of the lens that I use to see life through. It’s time to start using the one that helps me focus on what’s truly important. It’s time to switch my lens.

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Pain, pain, go away!

It’s a rainy day here in Central Florida…one that worked well with my impromptu nap this afternoon! It’s crazy to think that the week is already half over. I spent almost all weekend and a lot of this week “relaxing”. This really means that I’ve been too tired or uncomfortable to do anything. Thankfully my husband and little guy have been wonderful with taking care of me and ensuring my comfort.

I’ve consistently been draining a lot of fluid from my lung, which is drained every Monday, Wednesday and Friday. Last week ended at 850 ml, which was the amount drained again on Monday, and then 600 ml today. I owe a phone call to the doctor because Monday and today’s drainings hurt enough that I asked them to slow down and stop. I’m not sure if it’s close to the end and that’s why it hurts or if the tube is in a weird spot. It’s worth the ask, either way. The fluid causes discomfort and pain in my chest because it fills so quickly and in general, my back has been hurting a bit. I imagine this is also caused by the fluid but who knows.

My appetite is not awesome and I’m losing weight rather quickly because of it. This may be because of the mixing of chemo pills, Afinitor and Xeloda, so we will see how I feel during my week off, starting tomorrow. During my first trimester of pregnancy with Jacob, I had major food aversions. Everything seemed to upset my stomach and I basically lived off of cereal (this actually remained true throughout the rest of my pregnancy). Just the smell of foods would make my stomach turn. Even the times that I would crave something like crazy, I would eat it and immediately it would become unbearably unappetizing to me. This is reigning true now, only times about 10. Thank goodness for smoothies.

I’ve been able to get things done off of my to-do list, which helps me to feel accomplished, though my list is taking significantly longer to accomplish than it once did. I’m tired relatively quickly and often need to lay down after crossing a few things off. I’m grateful to be able to accomplish as much as I can, despite not feeling wonderful. 

It’s frustrating. The pain, the discomfort, the utter exhaustion and the overall feeling of not being well…it sucks. Throughout most of the last year and a half, I have been able to push through the times that I’ve felt bad, knowing that I would eventually feel good again. I’m struggling with that right now. The times that I feel bad are becoming more frequent than the times that I feel good.  And that hurts. I don’t like that. Despite putting on a smile and going out to do something, I am finding it harder and harder to force aside the feeling of discomfort. It’s frustrating because I want nothing more than a sense of normalcy, for my family to feel comfortable going out with me and enjoying our time together, rather than worrying if I am doing ok. I know they will worry either way, it’s just hard to come to terms with the fact that my new normal changes by the day. 

Tonight Jacob asked me if he could bring me to the doctor to feel better. While his innocence warms my heart, it stings for him to know that I’m not feeling well. I told him that I went to the doctor and have medicine to help me get better. He squealed in excitement at that and hugged me big.  He exclaimed, “Yay!! You get better! Did you see Dr T?” I laughed at his reference to his pediatrician (it amazes me what he remembers!) and held back tears, knowing that I will never get better despite his excitement.

I don’t share this for pity or to cause concern. I am not giving up and I know how very blessed that I am – if the last week has shown me nothing else, it’s that I am truly blessed. I share this because it is the reality of how I feel in this moment. Cancer sucks. It’s not all pink and frilly, sprinkled with rainbows & butterflies with a dash of survivorship. It’s constant pain, a forced smile and a lack of appetite. It’s a hope for a good day, the need to not have to nap, and to sleep through the night without waking up in pain.

It’s not letting my family see the struggle or witness the constant discomfort. It’s being afraid to make plans for the future, out of fear of how I will feel. It’s wondering if I will truly feel worse than I do during my worst moments now.

But, I will push all of those thoughts and feelings of discomfort aside. I will hug my boys and snuggle them to sleep. I will watch them breath deeply with sleep, knowing that for now I am blessed to wake up by their side and embrace another day with them. That, in itself, is one of the biggest blessings of all.

💚

Today…I slept.

Since being diagnosed with cancer, especially Stage 4, I am not a big believer in “wasted” days. You know the ones that I’m talking about…the days where you stay in your pj’s just about all day or that you get dressed but never leave the house or that you even spend simply binging on some TV shows. There was once a time where I felt as though I had to go-go-go in order for the day to feel particularly memorable or significant, I suppose. After Jacob was born, any day spent snuggling with him was considered amazing and yet I still felt the urge to be doing something or to have plans most days. 

I have an ongoing list of things that I need to do. While they aren’t “urgent”, they are things that loom over my head. They don’t require a significant amount of effort, since most of them are phone calls or follow ups, but they are things that need to be done. My home health nurse visited again today (Monday, Wednesday, Friday for a few short weeks), and I figured I’d tackle my list after that.

Today though, I slept. I didn’t mean to, it just happened. I have been battling with sleep since before surgery and the last two nights I have gotten close to 7 hours, which is exciting. The nurse came and removed another 750 ml of fluid (what?! Friday was only 260 ml. I don’t know how it increased, but I wonder if it has to do with my position during draining.)

I felt particularly tired after the nurse left and laid down, setting my alarm for 45 minutes later. I figured that I’d have a quick nap to regain my focus and then tackle my list. The day had different plans.

I woke up hours later…literally. I couldn’t believe it! I must have turned my alarm off while sleeping and continued to snuggle under the covers. 

When I finally woke up, I felt quite guilty. My list is still untouched – well, that’s a lie; I just added 3 more calls to it – my coffee is sitting cold in its mug and I haven’t even unloaded the dishwasher from last night. I feel guilt trying to sneak in and make itself comfortable, but I won’t let it. I was tired and my body needed the extra rest. I feel as though I have pushed myself many times over the last year & a half and I don’t want to do that anymore. Whether I meant to or not, I gave my body the rest that it craved.

So, that’s my day. I do not consider it wasted but rather needed. A day that my body and mind was urging for…to rest. 

Getting organized!

I posted a few weeks ago about needing ideas for how to help organize the ridiculous amount of treatment related…stuff.  I received a call a few days later from Aaron, the owner of Bear Residential Construction in Zellwood. He explained that him and his wife read my blog and have been wanting to do something to help – and that helping with storage was right up his alley!  He asked to come by our house the following week to see what space we had and what supplies we were looking to store.  I was shocked and excited about the offer!!

Aaron stopped by last Monday, along with Mike from Team Gina. They were surprised at just how much stuff I actually have related to treatment – with more supplies for the PleurX Catheter on the way. They discussed options and thought that a large cabinet would be best, which we have the space for in our bedroom. It would allow us to consolidate all of my supplies, which are currently spread amongst the two bathrooms, a closet, my master bathroom sink and the top of the refrigerator, into one central location. I was giddy with excitement when they showed me what they had in mind and headed out to order supplies.

Aaron called me Friday to let me know that everything was on track and that they should be stopping over to install it today – which they did! Aaron and Mike ventured back over to our side of the town, bringing Tom from Team Gina with them, and with the trailer in tow. 

They spent a few hours installing the cabinet in our bedroom. They secured it to the wall, removed the baseboards so that it sits flush and even brought along childproof locks to keep Jacob out. The cabinet itself is amazing. They painted it to match the other cabinets in our bathroom, included adjustable shelves and it has TONS of storage space! It’s…incredible. It’s more than I ever envisioned and works perfectly to centralize all of my supplies – and in a place where I use them most!

In addition to the cabinet that they graciously supplied us with, they asked if we would like to join them for the weekend at the Team Gina Golf Tournament in April. Ummm…YES!!

AND!! We get to ride in the hot air balloon to help with the ball drop for the tournament. How cool is that?!

On top of the cabinet, the golf tournament and lots of laughs with the guys…they also gifted us a very generous donation towards my medical & prescription costs for this year.

To say that I am too blessed to complain would be an understatement. These men have made – and continue to make – a profound impact on my life and the life of my family. They are kind, caring, generous, loyal and funny. I am so blessed to have them in my life. 💚

Friday’s draining..

The home health nurse came today. I’m glad that it will be the same woman each time and that she is kind. I answered a small amount of questions – nothing like yesterday – and she took my vitals. I explained that I suspected there to be some fluid, maybe around 500 ml, because my friend noticed my shortness of breath unloading the dishwasher yesterday (she actually made me stop so she could do it) and also that I had been coughing quite a bit. We had a choice of ordering bottles in the 500 ml or 1 liter size. After talking it over, we decided to start with the larger size in case it’s a decent amount of fluid at first. We can order the smaller ones next time if we need to.

The bottles come in a sealed bag with a sterile kit that includes gloves, all bandaging needs (though I will need to order more so that I can change bandages in between, such as when I shower), alcohol wipes for cleaning the tubing & my skin around it and caps for the tubing (the caps will be replaced every visit). We decided that laying on the bed sitting up would be best and likely the most comfortable for me. 

Since the hospital had the tube outside of the bandages, she was able to drain me before changing them. After cleaning the plugs, she hooked me up to the tube connected to the bottle and fluid immediately started flowing out. She expressed her surprise, indicating that when the fluid comes out quickly like that it typically means that there is a large amount of fluid in there. The bottle was filling rather quickly too.

The hookup of the tubes is where some people say there is pain but I could only feel a little pop of pressure. The draining didn’t hurt at all and actually I could feel a bit of relief as the fluid left. It must have been putting a good amount of pressure on my lungs. There is a roller thingy on the tube that connects to the bottle so that I can control how fast or slow the fluid should drain or to stop the flow entirely. We started slow but picked up speed when I realized it didn’t hurt (I was super nervous about it being painful – still am!).

As the bottle filled, I could feel a bit of discomfort forming in my lungs and a cough getting ready to form. We slowed the fluid, saw that the bottle was already past the amount that is supposed to be taken at home, and stopped the flow. 1100 milileters was drained! That is craziness…the nurse indicated her surprise since I was drained 1200 milileters late Tuesday. She unhooked me, cleaned it and capped me off.

Next she took off the hospital bandage, cleaned me up from the antibacterial stuff they wiped on my skin from surgery (it was under the bandage so I couldn’t clean it myself), and then rebandaged me. The removal of the sticky tape was probably the worst part (does that bother anyone else?). The fluid itself gets flushed down the toilet, the bottle is wrapped in a plastic bag and tossed. Sadly, they are not recyclable.

The entire process took less than an hour and I was glad to have the bandage replaced. I still cannot believe the amount of fluid that came out today. Like I mentioned yesterday, I’m not sure if they didn’t drain me in full on Tuesday or if I’m truly filling up that fast. It also made me wonder if my lung will only hold 2 liters at a time and maybe that’s why I am always so uncomfortable. Perhaps it wants to produce a liter every other day but can’t because there is no room in my lung…until now. So it’ll be interesting to see how much fluid I continue to produce. I literally weighed 3 pounds less from the fluid removal. 😐

So that’s my excitement for today! Aside from that, I have been battling a cold that doesn’t seem to be getting better. We ventured out of the house tonight to see some dear friends and just a few hours into being out, I could feel that my body had enough. It was the first time that I had been out of the house since surgery but unfortunately, it didn’t last long. My cold seemed to get a little worse and the soreness that was getting a little better came back at full force. Yeesh. It was nice to get out for a bit and see our friends though!

So this weekend will be spent resting, recovering and enjoying this beautiful Florida weather with my boys. Happy Friday night, all. Here’s to the weekend! 💃💃💃

I picked up Jacob today.

It’s strange adjusting to having a tube permanently attached to my body. For some reason, they bandaged me up but left the tube dangling so it’s extra weird. I asked the nurse to tape it in place so I don’t accidently pull it (eek!). Thankfully the home nurse is coming tomorrow so I can have it rebandaged with the tube wrapped up under the bandage.

I’m sore but it seems to be getting better. Thankfully pain medicine helps, I just need to stay on top of it. I slept through a dose last night (hurray for 6 straight hours of sleep – that hasn’t happened in weeks!) and woke up super sore with the alarm clock today. Yeesh, not fun. I find myself leaning to the right to avoid pain but I try to catch myself doing that. I certainly don’t want to feel better because I’m walking around in a weird position. 😉

I have two incisions from the surgery. One has the tube coming out of it & is covered by a big bandage (so I haven’t even seen it yet) and one is stitched up but under the clear adhesive cover. Both are tender and I can’t help but yelp a little in pain when I accidentally nudge that area. My chest feels better than the pressure that I was feeling before so I’m grateful for that!  The pain isn’t from the pressure so much as the wound itself, so I’m hoping by the time the weekend is over, the pain will be gone.

I’m curious about how much fluid the nurse will remove tomorrow. They took out 1200 milileters during surgery, which is the least that they have taken out so far. But they were only supposed to take out around 1000-1500 ml with this procedure so I’m not sure if they stopped draining because the fluid was gone or because they reached the amount they are allowed to take. We shall see tomorrow morning!

Yesterday was a bit too busy for me considering it was the day after surgery. I had my monthly Xgeva shot, which took hours because of a delay with the their annual pharmacy cleaning. We left with just enough time to arrive home to meet the home health nurse. She came over to get the initial registration paperwork completed. My goodness, this took over 2 hours! She wasn’t kidding when she said there were a lot of questions. I went through the basics of medical history, medications, surgeries, etc. Then things got weird. I had to describe my escape route (I have more than one door to my home, in case you were wondering!) and how I would handle a hurricane that was coming to my area (this was a “stay” or “go” question but I had so many questions in response to the question before I could give a one word answer! 😐) The nurse was kind and we had a good laugh over the outrageous questions. She will be the nurse who comes to drain my lung too so it was nice to meet her in advance.

After she left, it was a long phone call to the equipment supply company to ensure that I had the PleurX Catheter supplies before Friday. They called when I was in surgery on Tuesday but when they spoke to Joe, they refused to place any orders while I was actually IN surgery. Apparently I had to be home first. It’s protocols like this that seem silly to me. I imagine the process is in place for a reason but the delay of a day meant that delivery had to be 1.day shipping instead of 2 day shipping. Thankfully I didn’t have to pay for the shipping but I am sure that cost is incorporated into my healthcare somewhere.

Needless to say, after all of that- I was ready for a nap! A quick nap turned into being woken up 3 hours later to Jacob being dropped off. Yikes – I guess I was tired!

So today, I was able to relax with a friend and watch movies. It was needed after the craziness of yesterday. She even made an amazing crock pot meal for us so we didn’t have to worry about dinner! ❤

And tonight. Well, tonight Jacob hung out with me while I made Valentines for school. I’d like to say he helped but he mostly just wanted to play with the string. 😋 Before we knew it, it was bedtime…and I was able to pick up Jacob. It sounds silly and it was only a couple of days that I wasn’t able to lift him but it felt like forever. And I was able to tonight. I can’t express just how exciting that is! 💗

I hope you are all enjoying your week and are excited for Friday. Have a wonderful night and keep spreading that LOVE!!! 💞