Whew, a bit of relief…

It’s been a long couple of days. I fell asleep while little man played next to me around 5pm Tuesday night and I have barely moved since. I woke up later that evening with a horrendous headache that medicine barely took the edge off of. Wednesday was a heck of a day. It was spent in my bed, unable to keep anything down – including medicine for my massive headache – and trying to sleep away the pain as best as I could.

I’m not entirely sure what caused this intense headache or vomiting but it’s been awful. When I was able to keep down my headache medicine, it would give me a few hours of relief and sleep until I awoke again in incredible pain. I debated on going to the emergency room and decided to give it until this morning to see how I feel.

I spent most of the night awake and in tears from the pain. I prayed hard that I would be able to keep my next dose of medication down and that it would provide relief. At 3am, God answered that prayer and allowed me to sleep with a dull headache.

Thankfully, this morning I awoke with a dull throbbing. The massive headache of yesterday only came once so far today and I was able to keep the medicine in my belly. It was able to work and I was able to sleep. My head has been throbbing on and off all day but it’s been bearable enough that I don’t feel the need to visit the ER.

I also woke up with a slight hunger and I’ve been able to keep down a banana, an apple and saltines. This is good progress from yesterday!

I’ve still spent all day in bed and will likely remain here for the rest of the night. Thankfully, Joe has been wonderful with Jacob and little man has been helpful in taking care of his momma. ❤

I’ve spoken with my oncologist, who prescribed a new headache medicine in the hopes of offering me some relief. I’ll take it in just a bit, once the crackers in my belly settle.

I had a similar headache when I first started Afinitor, so I wonder about that side effect. It’s also possible that it’s a virus. We took Jacob to the doctor early Tuesday and he is fighting the cold virus and the stomach bug – poor little man! And I can say, I haven’t made much of an effort not to catch either of those.

By tomorrow, I hope that I will awake without any hint of a headache and that my energy level will be up again. It’s been a long couple of days!

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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.

💚

All done – my lung is back!

The pain in my chest has been quite intense. I can feel the pressure of the fluid and my inability to inhale deeply. I picked up a copy of my x-ray and it indicated that 50% of the space around my right lung is significantly filled with fluid, it is compressing my right lung and even my left. Ouch.

Whenever I pick up Jacob, I am winded. I can’t walk from one room to the next without feeling short of breath. If I walk while talking, I have to stop and breath in between. I can’t get comfortable at night sleeping because it hurts to feel the fluid move based on my position. So I was anxious to have the fluid removed today.

The procedure itself was similar to the one I had in December, however it was a different doctor and the treatment was done in a treatment room in the office. She positioned me, cleaned my skin and numbed me up…then it was time to drain the fluid. She stuck the needle in along with the catheter and then left the catheter to drain…one big bottle…a second smaller bottle…and a third big bottle that was partially filled. 

By the time of the 2nd bottle, the coughing began. I could feel rattling in my right lung, which my doctor said was the mucus in my lung. When my lung is compressed, the mucus membranes squish together since they don’t have anywhere to go. Once they are free to float around again, they aren’t entirely sure what to do with themselves. I continued to cough for the remainder of bottle 2 and all of bottle 3…and then some. It was the type of cough that had some tickle in your throat and there is no controlling it. It hurt to cough and I couldn’t inhale without sharp pain either.

A glass of water helped and then the catheter was removed and the doctor held the wound for a bit to ensure there was no blood because of my platelets being low (they went up yesterday from 80 to 91!).

Guess how much fluid was removed? 2 liters and 50 milliliters…about 4.5 pounds of fluid. How in the world did that even fit in there?!

I put on my top and then went for an xray to confirm the fluid is gone and my lung re-expanded. It all looked good!

Then the pain began. The doctor explained that it will likely hurt for a day or two because my lung is used to being compressed now. On top of my chest pain, I must have been holding my shoulder weird to overcompensate for the fluid. Between my chest and shoulder, moving around isn’t quite easy. Hoping it goes away soon!

I also can’t quite breath fully yet, I’m still winded when walking and I can’t take a full breath. Though all of this is normal, I’m hoping when I wake up – the side effects will all be gone. We shall see!

So, all done (as Jacob would say)! I’m glad to have it gone and that the Afinitor will ensure it doesn’t come back. Here’s hoping!

Gnight all!