Today was not awesome.

The medication that I take at night for my chest pain certainly helps me to be more comfortable but I still wake up like clockwork every 4 hours. Mornings are the hardest. I assume that’s because I’m moving around more and my body doesnt love that just yet. I’m grateful for some relief even though it’s not perfect.

I had my platelets checked today prior to my procedure. They jumped up to 139! Though that is quite literally the lowest “normal” number, it’s still within normal range. This is exciting, though I can’t help the thought that crosses my mind next…could that mean the Afinitor has stopped working already? A quick search & Dr Google let me know that a side effect of Afinitor can be that there is a sudden temporary drop in white blood cell or platelet count. I’ll take that as a good sign! I have scans Monday that will give a status update also.

Next I headed over to the procedure. I had lots of questions, of course, and she was already armed with answers and suggestions before I even asked. The thoracentesis was started right away like before, except this time it hurt…a lot worse. The one I had before vacation was a bit worse than the first one, which I assume has to do with the fact that my body is expecting the procedure to some degree.

The doctor was just getting ready to start draining my lung when a sharp pain started. It was on the same side but only hurt a little on my back where the catheter was and hurt like crazy in the front. I recoiled without meaning to and repeatedly asked her to stop doing anything for a moment. Tears fell before I could process them and I grabbed the pillow in front of me as hard as I could. I knew that I needed to slow my breathing since I couldn’t breath very well from the start and the quick, sporatic breaths weren’t going to help anything. I slowed my breathing and my tears. The pain subsided after a few seconds and the doctor was able to begin draining my lung. 1700 milliliters later and we were done.

The doctor indicated that it’s called referred pain. Basically, it’s pain that shows up in an area different from its actual source. I assume that the catheter may have hit a nerve going in that wasn’t numbed. This caused my body to react to the pain but in a different area of my body. She explained that internal nerves are quite different than external nerves, like skin. It’s actually quite common that something will hurt internally in a location totally different than the source. This can also be partly to blame on muscle memory. After my last thoracentesis, I had significant shoulder pain. It was sharp and hurt quite badly but eventually went away. This was likely the same thing. A procedure was done internally on my lung and chest but the pain was felt elsewhere.

The doctor also indicated that the pain will continously get worse with each procedure because of scar tissue, muscle memory and even brain memory (apparently your brain recalls pain better than anywhere else). Obviously the pain was bad today and will only get worse for the next procedure – which will likely be within the next week to a week and a half.

Her suggestion was to have a PleurX Catheter put in place. It’s a “permanent” catheter that would be placed on the right side of my body and access the pleural space around my right lung. It would be similar to the drains that I had after my mastectomy but much smaller & lighter. I would leave the drain attached inside of me, roll up the drain and tape it to my side.  Initially it will need to be drained about 3 times a week. A home health nurse will come to my house in the beginning to show me & Joe how to do everything. Once we are comfortable (what would I do without this man in my life?), we will be able to do the drain ourselves. I will continue to see the doctor periodically to discuss the frequency of the draining, the amount and the catheter itself. It will remain indefinitely. An outpatient surgery is required in the hospital so that I am put to sleep and the procedure itself is done in a sterile, controlled environment.

The other option is to have a pleurodesis performed. There would basically be an irritant put around the pleural lining of my lung so that my lung sticks to the pleural lining, therefore not allowing any fluid to form. This is a relatively invasive procedure and would require a hospital stay of a few days, at minimum. It also requires that there is no fluid in my lung at the time of the procedure.  Since there is such a significant amount of fluid forming in my lung regularly, it is not likely to be the best option at this point. In the future, once the fluid begins to form less and I can reduce my drainage amount, it will be a good option.

So, tonight I rest. I still have pain in my chest, what I now know is called referred pain, as my lung learns to re-expand again. In the next day or two I will receive a call to schedule this surgery. I’m sure there will be lots of phone calls to make and plans to (re)arrange. But for now, I rest with my sweet boys and enjoy a lung full of air. ❤

I would like to give a special thanks to a fellow breast cancer warrior. She helped talk me through her experience with pleural effusions, thoracentesis, PleurX and pleurodesis. She took time to give me details in the day to day living with these options and helped me to understand what to expect. I am grateful for such wonderful people in my life. ❤

Not again?!

I had a thoracentesis done right before the cruise, less than 2 weeks ago. The procedure itself was more difficult than the first, I assume because it was more than twice as much fluid. I was advised that I’d be sore for a few days but that I’d feel better after a day or two. By the time the cruise came, I still had chest pain but it was significantly better. As the cruise went on though, the pain didn’t go away and towards the end of the cruise, it started to get worse. It woke me up at night quite a few times and I was struggling to breathe going up & down stairs or carrying Jacob around.

By the time yesterday came, I was texting my nurse oncologist by 730am to see if I could have my oncologist listen to my lungs. Being the wonderful people that they are, I headed over, went in the side door and as I walked past the oncologist’s office, he walked over to the room with me and started chatting immediately. Of course they all wanted to hear about the cruise and we swapped stories about horseback riding. Afterwards, I asked him if he wonders about me when a week goes by and he or his office doesn’t hear from me. He laughed at this, mentioning that he does ask about me when I haven’t checked in. 😊 What can I say? I’ve become a bit needy… 😉

Anyway, I explained the chest pain that I’ve been having that is just like before but the pain is significantly worse. He listened to my lungs and indicated that he could hear fluid in them, though it wasn’t as much as he had heard in my lungs before – which was a week before my last thoracentesis and 6 days before my x-ray confirmed 50% right lung usage. My thought on this is that I imagine the fluid is collecting so rapidly, by the time I have an x-ray done, it’s typically filled up quite a bit more.

We discussed that I have scans being done and see the Nurse Practitioner next Monday. The fluid would show up on a CT, and probably better, but he did not want me to wait a week before having my lungs checked if I am having symptoms- especially significant chest pain. So he wrote me a script for an x-ray and said that I can use it if I feel worse between then & Monday and let them know to check the results when it was completed.

We also discussed the chest pain and he switched up my medication a bit, particularly around nighttime since I am having a difficult time sleeping because of the pain. The medication took me to 4 different pharmacies to find and cost $163.45 for a 30 day supply. Unreal. So what’s worse? Yeesh.

The medicine seemed to help a bit and though I woke up like clockwork at the 4 hour mark, it didn’t hurt as significantly and I didn’t stay awake as long. By the time this morning came though, I had pretty intense chest pain and decided not to wait on the chest x-ray. It concerned me that if the fluid was growing that rapidly, I may not make it until Monday without something worse happening – plus the pain would only get worse.

So off I went today. Thankfully, an x-ray is relatively quick compared to other scans and an appointment for one is not needed. Afterwards, serious resting was required. I won’t lie, I felt pretty bad today. I have the chest pain plus extreme nausea and absolutely no appetite…I don’t feel as though I can function properly.  Resting was necessary. 

A call from the oncologist’s office a few hours later confirmed that the fluid is back, as suspected. Although it didn’t indicate how much of my lung was being utilized, it did state that the fluid amount was significant and compressing my lung. I am scheduled for another thoracentesis tomorrow (assuming insurance approves it), as well as blood work ahead of time to review my platelets. I pray they are not too low for this procedure to be done.

So that’s that. Never a dull moment here. The big question is obviously around why the fluid is coming back so quickly, whether or not the Afinitor is working and what to do going forward (how to prevent this from happening versus what to do when it does). I don’t have the answers right now. I have my own thoughts and opinions but I am anxious to talk to the doctors tomorrow. 

For now, this sweet boy is helping Daddy to take care of me. And they are both doing a wonderful job! I am absolutely a blessed woman. It’s lots of rest for me tonight – and hopefully some relief tomorrow! 😊

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!

Thoracentesis

I went to a pulmonary doctor today who reviewed my CT scans with me, explained all of the pictures and discussed next steps. The CT scan was quite interesting because my report says there is a “large” amount of fluid around my right lung but I actually saw it on the CT.  Yup, it’s a lot.  I saw my windpipes and the differences between my right and left lung. The doctor estimated that I was only using about 60% of my right lung. How do I not have symptoms?! He suggested my left lung is working hard to compensate for my right. Sheesh.

Without a biopsy, it’s hard to say what is causing the fluid. Cancer is likely but infection and other chemistry related reasons are possible. He showed me where the lining of my lung would typically be inflamed if there was an infection. He also showed me the “opacities” on my CT and explained that they are not of concern. They are quite small but do not appear to be cancer.

So in order to figure out what’s happening, the fluid needs to be sent to a lab. This requires that T word procedure that I can’t pronounce. After a discussion about the procedure risks, I was scheduled for an outpatient procedure this afternoon. 

The procedure itself was quite simple. I sat upright on a hospital bed with my hands on the table in front of me. An ultrasound was used to determine the best location of the fluid on my back and that area was marked. My back was then cleaned and I was numbed with 4 doses of lidocaine via needles into my skin. The doctor numbed the skin first, then continued to go deeper, explaining that the deeper areas tend to be the most painful if not numbed. The needles hurt like a bee sting and the fluid burned going in but nothing unbearable. I joked about needing to hurry up the numbing (referring to the lidocaine working) and the doctor thought I meant him and apologized – oops! We all had a good laugh over that and it helped to move my focus for a bit.

Once numb, a needle and catheter are inserted in between my ribs into the fluid. I could feel the pressure, which wasn’t overly painful but wasn’t exactly pleasant. Then the needle is removed and the fluid begins to drain. I glanced over and saw a bit of fluid in the jar and was surprised at about a quarter of a cup…then it kept going.  900 milileters!! That is just shy of a liter and about 2.2 pounds of fluid. WHAT?! How was that inside of me?! How did I not feel that?! I think I’m still in shock at the amount of fluid…

Once drained, which only took a minute or two, the catheter was removed and the fluid was marked for the lab. They took an xray and once confirmed that there was no fluid and my lung wasn’t punctured, I was all done. There was a bit of a wait before the procedure and waiting for the xray but for an outpatient hospital procedure, everything moved pretty quickly.

They’ll test for just about everything and I should have the results by Monday. The assumption is that it is cancer causing the fluid but we will know soon enough. Even if it comes back negative for cancer, it is still possible that it is caused by cancer and that cancer cells weren’t part of the actual biopsy.  Craziness.

Decisions need to be made but for now, I wait. It’ll be interesting to see the reporting that they do on all of that fluid. I’m so glad it’s drained. That is way too much fluid in my body that shouldn’t be there!

Pictures, if you’re interested! Thankfully he showed me the needle after he was done! Though he only needed about an inch and a half for me. Don’t mind my random look of fascination, awe and a bit of disgust at all that fluid!! 😉