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! 💃💃💃

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Going flat.

I mentioned the other day that I met with my plastic surgeon so that they could look at my radiation wound and determine what to do with it (whether or not to debride again). During that conversation, I asked if the breast cancer on my skin would inhibit the surgery, since there are bumps on my chest. He stated that it would not but then went on to discuss his recommendation not to do reconstruction. This came as a bit of a shock to me, as he has been a big advocate for doing reconstruction originally. Given the extensive radiation that I’ve had to both sides and the fact that I still have open wounds from the second round of radiation that ended mid-September, there are concerns. Wound healing aside, there is also a concern to adding a foreign object (the implant) to my body. My body may heal perfectly, but adding something else for my body to heal around is concerning, especially given how hard it is fighting against this cancer already. My body is already weakened. Adding another element to the healing process with a weakened immune system and knowing there are already healing issues is not recommended.

Obviously my life is more important than a reconstructive surgery. Setting that fact aside, this may be one of the hardest things that I have had to deal with throughout this entire cancer experience. Since the very beginning, reconstruction has been my “light at the end of a long tunnel”. I endured the placement of tissues expanders for over a year as well as the expansion of those expanders, which – to put it nicely – sucked. I have dealt with an uneven chest for most of that year – perhaps a month of that year I had an even chest. My self-esteem has wavered throughout this last year, I have been uncomfortable & tight more times than I can count and yet I’ve dealt with it. …because eventually I would have reconstruction. Eventually I would feel somewhat normal again. Eventually…I wouldn’t have surgery looming and I would be able to find comfort in my new body.

Late one night last week, I received a call from my plastic surgeon’s office indicating that they want to do surgery to remove my tissue expanders as soon as possible. We discussed this for a bit. I mentioned that I will be having the PleurX Catheter inserted semi-permanently and that I would prefer to coordinate both surgeries rather than have two separate surgeries within a few days of each other. The next few days were spent trying to coordinate just that – and surgery for both the catheter and the expander removal was set for next Tuesday.

When I went to my pre-op appointment on Friday, I asked what caused the sense of urgency. My doctors had been discussing when I will be able to have MRIs again and this prompted the question of why we were waiting to remove my tissue expanders. After discussing with us further, my plastic surgeon asked if I would be willing to wait a month before having my expanders removed. I would have the catheter placed on Tuesday regardless because that cannot wait, but the surgery to remove my expanders would be done in a month’s time.

The fluid was removed from my expanders on Friday, which is not exciting for me. Yes, the pressure is gone, which is nice, and I no longer knock into my chest whenever I move my arm. But there is a nerve causing some pain under my armpit on my left side from the pressure change and the ribs on my right are actually indented slightly from the pressure of the expander. Combine this with the actual removal of the fluid and I’m saddened by the appearance of my chest after all that I’ve been through.

By waiting a month, the hope is that the skin around my expanders will contract around the deflated expanders. This will not only mean that there will to be less skin post-surgery but it will also allow for smaller incisions during surgery. If I had surgery on Tuesday, I would need large incisions to remove the expanders and some of the skin around it. By waiting 4 weeks, the skin will hopefully contract and therefore will not need to be removed so smaller incisions can be used. Having smaller incisions means that the surgery is less risky in terms of the recovery. We know that I am having issues with healing already because I am still dealing with the radiation wounds. Smaller wounds means smaller area that needs to heal. He will basically be able to cut a small incision under what was once my breast and slide out the expanders from each side. I would also need to go off of Xeloda before, during and after surgery to ensure there is no interference with the healing process.

I asked if it was concerning to have two surgeries within a month and he stated that it was not. Having two surgeries will allow me the opportunity to heal from each without worrying about the other. On Tuesday when I have my catheter put in and begin having a home nurse, I will be able to focus solely on learning that process rather than learning that and having to deal with the two drains from the expander removal. I’ll be able to heal fully from each without being distracted by the other.

I know that’s a lot of information to process and the last few days have been a bit overwhelming as we did just that. The plastic surgeon was comfortable with either decision, however one of my deciding factors was that doctors don’t typically recommend something unless they have a true reason to believe it is the best thing to do. I also feel that if there is something that I can do to make things a little easier for my body, then I certainly want to do that.

So, that’s that for now. I will have my catheter placed on Tuesday and then have my expanders removed in about a month. It’s still not easy for me to move past the fact that I will not be having reconstruction but it helps to have the fluid removed from the expanders now. It’s allowing me the opportunity to get to know my new body. The plus side? This will require a new wardrobe that will be most flattering to my new figure. I suppose I should start saving my pennies now for just that! 😉

Today is a good day.


Joe & I ventured off to my scans bright and early today. I haven’t done full scans (neck, chest, abdomen, pelvis) at a local imaging center before because I also usually have a bone scan, which has to be done at a hospital imaging location. I must usually wear leggings too because when I arrived in jeans today, I was asked to change into scrubs to eliminate the metal button on my jeans. These pants had me cracking up! They had a rather large expandable waistband that tied at the waist and the legs were loose. The pants were actually super comfortable and I could totally sport them. These pictures had me cracking up though – I look so silly! The pants created a good laugh at the start of this long day.

The scans themselves were uneventful. For CT scans, I typically receive them with and without contrast. This means that I often have to drink a combination of water and contrast 2 hours ahead of time, they do a scan without contrast and then they inject contrast into my veins and scan again. When I go to the hospital, I have to arrive 2 hours early and drink the contrast on site then wait the 2 hours. They typically try and schedule the bone scan, which requires its own separate injection, during this time. I just recently learned that when I go to the hospital, I can have the script (for scans) written to have my port accessed. Since I went to a local imaging center today, I had to pick up the contrast last week so I could drink it at home prior to my appointment today. Much more convenient! They don’t have a registered nurse onsite so they had to access my veins for the injection instead of my port. I find it interesting that they wouldn’t train the technicians to access ports. It’s much more convenient, in my opinion.

I asked to ensure the scans were read STAT and my doctor had the results within an hour. Off I went to my appointment there next. I saw the Nurse Practitioner today. There was a rather long wait, which I debated spending on the exam table taking a nap (seriously tempting with how exhausted I am most days) but she came in cheerful as always and spent almost an hour chatting with us. I had a list of questions, which she joked was not unusual. My first question was about my scans. As she pulled them up, I expressed my concerns with progression, why I felt it may be happening and mentioned my tumor markers.

Aside from slight progression in my right neck lymph node and 2 areas of my spine, my scans are stable. Stable! This is such wonderful news!

My right neck lymph nodes showed some activity but it was considered minimal. My spine had some interesting activity that was indicated as stable but not listed on my report from December. My left iliac crest (pelvic bone) is not distinguishable on the exam – that’s right they couldn’t see it! – and my right iliac crest was stable. My lung and liver are clear, though I do have pleural effusion yet again on my right lung. It is already of moderate size and is indicated as also partially against my back, which explains the pretty bad pain that I have.

Stable. Ahh, such a sweet word. Yes, slight progression but overall stability. I’ll take it.

We talked for a while and she talked to me about the possibility of taking Xeloda again but this time combining it with the Afinitor. This is an interesting suggestion and not something that we have pursued. Aside from the pleural effusion, I had a good amount of stability with Xeloda. So perhaps combining it with Afinitor will help eliminate this cancer.

After I left, I headed to my appointment with the radiation oncologist. While waiting in the room, my oncologist called and talked to me more about Xeloda. We discussed side effects of before, that there aren’t a lot of studies about doing it and what it would potentially mean for my cancer. We decided it will be worth trying to see how I tolerate it and how I feel after the first week or two. This should be interesting…

My meeting with the radiation oncologist was good. My radiation wound is not yet fully healed, though it is slowly, ever so slowly, getting smaller. We discussed having the tissue expanders removed and she wanted to talk to the plastic surgeon about it to understand the logistics of that surgery. More to come on that.

So, though today was incredibly tiring, involved a lot of conversations, questions & learning and started early while ending late…it was a good day. A really, really good day. Stable. Ahhh, yes.

…and those pants! 🙂

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! 😊

Please, just be kind.

When I wasn’t sure what the status of my chest x-ray was this week, I called the place that I typically go through for CT scans to see if they had obtained my script and just hadn’t contacted me yet. It happens, I’m sure. A kind woman answered the phone, listened to my story and searched her different systems for the order. She explained that it had not yet arrived and wasn’t anywhere in their pipeline, apologized and recommended that I ask my doctor how and when it was sent. I agree to do just that, thanked her for her time and for looking. She replied with a bit of shock, saying “Well thank you, Meghan. I appreciate your kindness and for being so understanding. It truly is appreciated.” When I shared this story with my husband, I asked if people are generally unpleasant and he remarked that unfortunately that seems to be the reality.

In December when I initially had pleural effusion, the pulmonary doctor’s office called me and asked if I was available to come in first thing the following morning. The key word here being asked – it was not a statement but a question. I informed her that there was literally one meeting that I could not miss or rearrange and it was the one the following morning. My husband was receiving a surprise award and I had the incredible privilege of surprising him with it, in front of his entire department. There was no way that I would miss it, fluid or not. The woman’s response to me was, “So even knowing that you have fluid in your lungs, you’re not willing to miss this meeting?” I am sure you can interpret the tone. “I’m sorry but no. I tend to be quite flexible and this is probably the first time that I’ve ever said no to an appointment time. I can literally do any other time tomorrow or the next day.” I told her the earliest that I could arrive was 10am the following morning because it was downtown, about 45 minutes from my office and over an hour from home. She said she would check with the doctor to see if he would be willing to work me in later (A conversation that I imagine went something like, “I’ll take her whenever she can get here, it’s totally fine.”) She called me back and told me that I could arrive at 930am. Sure. I arrived at 10am and guess what? No one was concerned. The nurses and the doctor was incredibly kind and minus the front desk lacking any sense of politeness or friendliness, I was quite pleased with how the doctor was ensuring that I was cared for that very day.

When the nurse at my oncologist’s office called me yesterday to let me know the fluid was back, she indicated that she would also call the pulmonary doctor and have the fluid drained before vacation. I anticipated a phone call last night or early this morning but hadn’t received one by 10am so I decided to call. I had just seen the plastic surgeon and was a little distraught (at no fault of his – I’ll get into that later), so I was on the verge of tears already.

The appointment desk receptionist answered the phone and I squeaked out that I needed to make an appointment as soon as possible to have fluid removed from my lungs. With no acknowledgement and a bit of annoyance in her voice, she took my information to pull me up in the system and placed me on hold to review the schedule. She returned to inform me that I could be seen mid-February. I explained through tears that I was leaving on Saturday and that my oncologist had already called to ensure I am seen prior to this weekend. I explained that I have pretty intense pain in my chest and that I am having difficulty breathing because my right lung is only filling up by half. With no apology, she advised me that there was nothing she could do sooner. At this point, I couldn’t hold back the tears and they freely started falling, which caused my voice to crack between words. I explained that the last time this happened, the doctor fit me in the following day despite a full schedule. I can obviously have my oncologist call but I am trying to make the appointment myself. I reiterated that I’m having shortness of breath, assuming that this would spark some sort of “urgency”. She indicated again that there was, quite literally, nothing available for me and nothing she could do until February. I indicated that I would have my oncologist make the call and get in this week.

I will pause here. I mentioned before, a long time ago, that there are times where I am treated as a number and not a person. I find this rather interesting because I have yet to meet a doctor or a nurse that I didn’t like. They are always incredibly kind and often sit with me a little longer than they need to in order to chat about what’s happening in my life – regarding cancer and not. The front office staff though, I often find to be a little less friendly. There are exceptions to this rule of course, like my oncologist’s office staff who knows me by name and asks about my son. They even schedule me and tell me that they don’t have a time available that’s next to another appointment that I have elsewhere but that I should come on over at that time anyway and not wait the hours in between to be seen. Or the treatment room staff, who always comment on the Love Jars or my curls. But there are other places that seem to have missed the memo on pleasantries or have simply become too jaded to have any. This saddens me, as they are the face of the office and have the ability to make or break someone’s day. In a case like mine today, it is an urgent matter in which she was refusing to help. There was no acknowledgement or apology but there was also no hold to ask the triage nurse if she can fit me in or a quick look at another doctor’s schedule to see if I could see someone else. Perhaps I expect too much?

A text to my oncologist’s nurse and she was on the phone with the triage nurse from the pulmonary doctor’s office. Within an hour, I was speaking directly with the doctor himself. Though he is out the next few days, he fit me in with his colleague and I will have the fluid removed tomorrow afternoon.

I share these stories because I want to express just how important it is to be kind. We all have challenging days, I completely understand that, and I have absolutely had my fair share of unpleasantries. But on a day like today, I needed kindness. I needed someone – particularly the medical office that I was calling – to tell me that it was going to be ok and that they would ensure I am well taken care of. There shouldn’t be a need for me to call my oncologist’s office and ask them to handle it for me. Yes, I know they will but shouldn’t have been necessary…not when you are simply willing to be kind to others.

In this industry especially, I feel as though a smiling face or a simple how are you should be a baseline for how to treat others. I imagine that these particular individuals don’t want to be treated poorly either.

Be kind, my friends. Spread the love…always.