Surgery day

Whenever I have a job interview that I have a choice at scheduling, I prefer it first thing in the morning. I’m usually up early to ensure I am fully prepared, dressed just right and frankly, ready to get it over with. Having an interview first thing in the morning allows me to take on the rest of the day without being too focused on the position that I am applying for. Sometimes, when an interview is later in the day, I will get lost in my work and all of a sudden a reminder will go off that it’s time and I’m off to the interview in a whirl – needing a moment to compose and prepare myself.

For the surgeries that I’ve had so far, they have all been in the morning so there wasn’t a lot of waiting around – especially with the no food/water for 8 hours prior rule. Since my surgery today was originally supposed to be after my plastic surgeon’s surgery, it’s later in the day. I woke up early to have a small bite to eat and drink a bunch of water, since my cutoff time was 730am. I’ve been napping most of the day, as I couldn’t sleep very well last night. Aside from the slight anxiety about surgery (I watched YouTube videos yesterday, yikes!), my chest pain has been getting worse and I have a cough to go along with it. It’s also quite hard to breath and I find myself winded just by reaching for something. I imagine there is quite a bit of fluid built up in there by now. So I didn’t fall asleep until late. I don’t have much of an appetite currently but the naps this morning helped me not to think about food or water.

So, now I’m off to do a few last minute things before surgery and then headed to the hospital. I have to be there at 130pm for a 330pm surgery. The surgery should only be about 45 minutes long and I will be asleep for it (thank goodness after watching those videos!). Then I’ll be in post-op for a bit, where they will wake me from anesthesia and monitor me to ensure I’m aware. Typically, they also like to see me eat something small like pudding or applesauce too because of the anesthesia. Then, we will head home! Joe will post something online letting everyone know once the surgery is over.

So off we go! Lots of prayers for a successful surgery, removal of the fluid, little to no pain afterwards and a nice night of sleep after the anesthesia.  Here’s hoping! 😉😘

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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! 😉

Rallying for Red Phoenix – April 1st

As you may know, there is a fundraiser being held in my honor on my birthday! It is being thrown by incredibly kind friends & family who are jumping high with hands raised to see how they can help. You all are AMAZING!!!

There was a Save the Date sent via a Facebook invite on my IamRedPhoenix Facebook page. As of yesterday, we have a venue!! A restaurant near work (to be shared soon) has asked to donate their space for the fundraiser! Joe & I used to frequent this location for their happy hour pre-Jacob and it has been one of my favorite places for years for happy hour, date night, dinner with friends and even a dear friends baby shower. They have a room off to the side so that we will have our own space, there is already a musician just for us AND it’s less than 5 minutes from daycare!

We are working out the details and will share them as they come!! The exact time should be confirmed soon but the day is definitely the fabulous date of my birth – April Fool’s Day! This awesome night of fun will be an opportunity to come support my family and me, as well as celebrate my 33rd birthday!

The night is sure to be AMAZING and beyond MEMORABLE! There will be awesome raffles, games, prizes and MORE!!

Jacob’s school has graciously offered to open up their site for the night! Every teacher at his school has generously volunteered their time.  Parents will be able to drop their children off at The Learning Experience during the fundraiser. The kiddos will have a night of fun playing games, doing arts & crafts and maybe even a movie! The times will align with the times of the fundraiser (more to come). If you have questions or would like to sign your child up with TLE, you can call or email them. I’m also here for any questions or concerns. 😊

We have received half a dozen raffle items already! If you would like to donate a raffle item or know someone / a store who does, please let me know – the more, the better!

I’ve received questions from people who want to help with the fundraiser – whether it’s day-of help or prep work before. If you’d like to help, please send me an email at IamRedPhoenix10@gmail.com I’ll be sending out an email to all volunteers this weekend to discuss details.

A new page has been added to IamRedPhoenix.com called Give. You can donate any amount or use this page to donate for a wristband. Oh – and the wristbands are available in adult or children sizes!

This fundraiser is a reminder of how incredibly blessed I am. No, this cancer diagnosis & prognosis are not awesome. And yes, I have been in pain for a few weeks. But none of this can be helped- I simply want to embrace and enjoy the moments that I have. Being able to celebrate my birthday surrounded by friends & family is one of the most amazing blessings that I could ever receive.

Hopefully we will see you all there on April 1st!

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!

Make no mistake – I am dying. 

Those words are not easy to type and I do not use them lightly. But the reality is that I am dying. I have been given a prognosis that is the national average for my survivability based on my diagnosis. I have not shared that broadly because I honesty cannot wrap my head around it and because I hope & I pray & I visit all of these places so that I can try to outlive the time that I have been given. But at the end of the day, my disease is terminal. It is probable – and likely – that I will not see my son attend his first day of kindergarten.

The other day someone mentioned that they are considering stopping treatment. This person is Stage 4, undergoing maintenance treatment that will never stop and that thankfully has been working for about 2 years. But she struggles with the anger behind this diagnosis and the frustration that she has been dealt a bad hand. My heart hurts for her. I actually have a difficult time wrapping my head around that because I don’t have the option of maintenance treatment. And I can’t fathom giving up.

Despite this prognosis, I am striving for normalcy. I work hard, I bring my son to school everyday, I visit with friends & family, I juggle the standard treatments & side effects along with the sudden or urgent needs and through all of this, I make plans for the future. Will I be here to see these plans through? No one knows. But that doesn’t mean that I’m not going to make those plans and get excited for what’s to come.

It helps me to share my story openly and to be honest about my feelings. It helps me to find the joy along the way and to add a small bit of humor to an otherwise unpleasant story. It helps me to just be me. Maybe this sentiment is selfish of me.

If I were to look at the facts alone, they are grim, scary, concerning and well, actually quite terrifying. I continously have progression while simultaneously having stability in other areas. I have side effects from treatment, prescriptions and cancer itself. I struggle with udder exhaustion, to the point that I literally force my eyes to stay open while trying not to let anxiety or fear take over when it is always knocking on my door.

And it never ends. Any of it. I will, quite literally, take some sort of treatment until the day that I leave this earth. 

So this is my reality. This is just a teeny-tiny snippet of what it means to have a terminal diagnosis. I could very easily wrap myself up in a blanket, lay down in the fetal position, close my eyes and give up. But that’s NOT ME.

I want to live. Yes, I have bad days like yesterday where I cry most of the night. But then I pick myself up, wipe away the tears and move on. Because I am here. I am blessed with the gift of today and I don’t want to waste it. I want my son to remember his momma full of love and life. I don’t want him to remember me sick.

I’m sorry if this post upsets anyone and I’m sorry if it’s hard to hear. But this is my life.

I will continue to choose life and love and joy. I will not give in or give up or lay down – to this disease, to any side effects or to anyone who may think that I’m not actually sick. 

I love you all. Continue to spread love and don’t ever let anyone steal your joy.