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! 🙂

My jam! …and my reasons.

Today, church talked about all pain having purpose. Whether or not we see it or feel it or even understand it – the purpose is there. Whether the pain is physical or emotional pain, the purpose is there. There have been a lot of things happening recently that have given me pause and caused me to stop making excuses and instead make changes in my life. Any obstacle or excuse that I have found has been, quite literally, alleviated before I even had a chance to concern myself with it. I cannot help but see that God has a plan and a purpose, even if He isn’t showing it to me yet.

I’ve mentioned previously that scanziety is very real. Whether you feel great or crappy, there is always a fear when scans approach. Even as recently as December, my doctor was 80% sure my scans looked stable and then – POOF! – cancerous fluid is present, and I didn’t have any symptoms. I’ve been through quite a few scans over the last year & a half – some have been great and others, well, not so much. One thing that I’ve learned is that I cannot change the outcome of the scans. I can only change my perspective of them.

So as tomorrow’s scans quickly approach, I decided that it’s better if I share how I feel physically. I think this will help me to better prepare myself for any news that may or may not come. It is not helpful to worry unnecessarily or spend time fretting about what may or not be. I need facts, conversations with medical professionals and to remain calm. That being said, scans are always something that I try to turn a blind eye to because I don’t want to spend too much time or energy thinking about them beforehand.

I pulled up my tumor markers yesterday, from Wednesday’s blood work, and saw that they were elevated. You may recall that they dropped back on January 5th – which had me jumping for joy. Unfortunately, they are back up again…and higher than they were in December when I stopped Xeloda. My CEA is 16.3 and my Cancer AG 15-3 is 26.7. Yuck.

When I saw my oncologist back in the beginning of January, he had shared that even if my end of January scans showed progression (depending on how much), that he may not change my treatment yet because typically new treatments take 10 – 12 weeks to be in full effect. I don’t know whether or not the fact that my tumor markers were initially lower will factor into that. I imagine that my scans will play a significant role in that decision as well.

I will say that my lungs were full of cancerous fluid when I had my blood drawn – over 1700 ml of it…enough to warrant a procedure to implant a permanent catheter. I don’t know if this matters in terms of tumor markers or not. Perhaps Afinitor doesn’t have the opportunity to work fully on my cancer because it can’t keep up with the fluid build-up in my lungs. Who knows – I don’t even know if that makes sense medically. 😉

Some parts of my skin look significantly better, such as two of the areas above and below my radiation burn that have been quite painful since September. Both areas appear to be healing, which they haven’t done much of in the past 5 months. My skin lesions, on the other hand, aren’t looking as good. They don’t look a whole lot worse, mostly just redder and perhaps one is big enough for a trial now (it may be slightly too small still), but also there seem to be just a couple more than there were a few weeks ago. There weren’t any new ones popping up initially – which was fantastic. That may have changed.

The lymph node on the right of my neck that was previously swollen – and then disappeared – seems to be venturing back into my life. My jaw also suddenly hurts when I yawn, so I’m not sure whether or not that is from Xgeva or a cancerous node.

So that’s where I’m at. Oh, and I’m tired. My platelets have suddenly risen (another concern of mine that Afinitor may have stopped working) so I can’t blame them for my fatigue. It is on my list of questions for the Nurse Practitioner tomorrow though. It doesn’t seem to be getting better, despite my numbers changing.

I’ll admit that when I first saw my tumor markers yesterday, I was a bit distraught. It was the one thing that I was holding onto that would tell me all of these other things could be explained away. Seeing that they had jumped, and higher than December, hurt. A lot. Frankly, I was angry. I can’t catch a break with treatment! My cancer is just too dang smart – it keeps mutating to beat out any chance of it dying off! Why do I keep trying when cancer just continues to win?!

Yes, I was yelling – mostly at the Universe. At that moment, a new song came on the radio and Jacob yelled “This my jam!” and put both hands up the air to dance along while singing to the music. I took a deep breath and smiled.

This is why. Right here. Jacob, Joe…my family, my friends. This is why I continue to fight. This is why I don’t let progression or tumor markers deter me. This is why I will unearth every possibility for treatment that I possibly can in order to live out every single moment of life that I am able to. These boys, these are my reasons.

I may not know what God has in store and I may not know what the future will bring but what I do know is that I am meant to be here now, in this moment. I will not waste my time worrying or being angry about this cancer. I won’t waste my time concerning myself with things that I cannot control. Instead, I will stop, change course and redirect. Because that is the only way to move forward.

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. 

Dang it, fluid!

I’ve had chest pain since late Thursday into Friday morning. On Thursday when I saw my oncologist, he had mentioned that my right lung was not holding as much air as my left lung. Since I had no symptoms at the time and would get a chest xray before the cruise, there was no concern at the time. 

When I woke up with crazy pain in my lung the next morning, I suspected the fluid was back. Lung issues tend to be a side effect of Afinitor too so which one it was was up for debate.  Add in the insane heartburn that I had over the weekend, plus the ridiculous fatigue, and it’s no wonder I wasn’t feeling great.

I learned today that I didn’t need an appointment to get an xray. Knowing that I have two appointments tomorrow, including one that will check my platelets, I decided that it would be best to have the xray today. I feared that if I waited until tomorrow and my platelets came back needing a transfusion, then I may be cutting it a little too close to vacation. 

So I headed over to the xray this afternoon and received a call within an hour that the fluid was back. This time it is covering up more of my lungs, so I am only using about 50% of my right lung. That explains the pain, the shortness of breath, the coughing while laying down and, well, the crazy pain. 

Now, the first question is “what about Afinitor?!” So I suspect that the fluid started to form before I started to take it and the drug just couldn’t keep up enough. My tumor markers are down and I can’t help but wonder if they’ll be down even more once the fluid is gone. Also, the pain was crazy bad over the weekend and, dare I say, slightly, ever so slightly, better yesterday and today. I say that because it’s possible (in my head anyway) that the Afinitor is trying to battle this fluid. Then again, it could still hurt like heck and I’m just getting used to it. Who knows! 😉

So my oncologist’s office is contacting the pulmonary doctor to ensure that I have the fluid drained before vacation. 

In the meantime, tomorrow we will check my blood counts and hopefully I won’t need a blood transfusion. Though I may still need something to help with this fatigue. I know vacation is all about relaxing but I don’t want to sleep the whole time!

Having the fluid come back so quickly is a bit disheartening and a bit frustrating. But that doesn’t mean that Afinitor isn’t trying. I believe that it is doing what it can to work again this cancer and once this fluid is gone, it’ll take over and put it at bay.

On a positive note, once the fluid is drained I should be down another 2 or 3 pounds! What better way to start vacation when you know you’re going to eat all week?! 😁

It ends with good news…

This weekend has been a little rough. I mentioned the other day that I’m incredibly exhausted. It hit me hard this week, which could be because this week back to work, and all aspects of life, was chock-full.

The right side of my back has been bothering me for a few days. It’s not horrible but it hurts. I am getting a chest xray next week though, so I’m not too concerned for now.

So then I woke up before the sun did on Saturday with insane heartburn. I had it horribly bad with chemo in 2015 and radiation last year but this time might take the cake. Just like before, it hurts in my esophagus as if I have burning actually in that area. It almost feels like a pill or 10 got stuck. So I started back up on my medications from before and Googled whether or not it is a side effect of Afinitor. It’s not, which is surprising. Something like 17000ish people were asking about their side effects and 7 of them reported heartburn. I’m gonna go with no… 😉

Anyway, so then Joe & my mom both mentioned the same issue – ridiculously painful heartburn. Joe even takes medicine for it and it’s not helping. So as much as it sucks, we are hoping that perhaps it is just something that we ate and will go away in another day. Otherwise, I I’ll be asking my oncologist before vacation.

So between exhaustion and heartburn, I’ve spent most of the weekend in bed. I feel as though I could sleep for days. I’m curious when they take my blood on Wednesday if they will require a transfusion or not. Perhaps there is something else that they could give me to help…who knows. We shall see this week!

Anyway, so then there’s my tumor markers. They were drawn this week and I debated on whether or not I wanted to see them. It’s a rather hard decision because I am cautiously optimistic of this Afinitor and afraid that seeing the numbers continue to go up will hurt. I debated on whether or not knowing is worth it if my numbers are still rising. A true struggle, right?

In the end, wanting to know won. I kept touching my neck and wondering if I’m not touching the right area and maybe it’s actually still swollen. Or maybe it’s the essential oils that are helping the cancer on my skin. Or maybe a hundred other things. And do I want to go on vacation wondering if this is the last one I’ll ever take?

I decided that I needed to know if this drug is working because I want to tell my son that our next cruise will be just as incredible…and know that I am telling him the truth.

I had my tumor markers taken when I had pleural effusion and my CEA was 11.4 and my Cancer Ag 15-3 was 23.3 on December 19th. It was up from November 30th, when my CEA was 8.7 and my CANCER AG 15-3 was 18.3.

My Cancer Ag 15-3 has always been within the normal range (under 31.3) but it has always gone up and down with treatment and progression. My CEA though has always been a solid indicator for me (anything under 3 is considered normal).

On January 5th, my CEA was 10.2 and my Cancer Ag 15-3 was 17.5. 
They went down. Yes, it’s just a little. Yes, my CEA is still high. But they are down now. And they were climbing in December. 

Down. They are down.

Oh, this makes my heart smile. I know things can change in an instant and with cancer they often do. But right now, my numbers are down. This treatment, though not standard for me, may actually be working. 

I may be number 2.

Happy Sunday to that, my friends. 😙

I want to be number 2.

I’m tired. I know, I know, I say that a lot. But I am. I thought it was because I was pushing myself towards normalcy and was excited for time off, despite appointments, to rejuvenate. I napped with Jacob almost every day for 2-3 hours at a time and was still ready for bed with him at 830pm.

I went to the checkup with my oncologist today. He spent lots of time with me and we talked about how I’m feeling. I expressed my tiredness to him. He asked if it’s something that I simply wanted to mention or if it’s gotten worst over the last 3 weeks. I said that I feel like it’s gotten worse, however I don’t know if it’s because I was off and I just had the opportunity to nap. Maybe I’m always that tired but don’t normally nap?

So we checked my blood count and my platelets, which have always been normal (even the low end of normal during chemo), were 80. The range is 139-361. Since I’ve never had platelet concerns, they did another blood draw, this time from my arm instead of my port. 86 this time. Well, darn. I guess that explains why I’m so dang tired! A quick review of the side effects of Afinitor and sure enough, there it is.

I go for my Xgeva shot next week so while my numbers aren’t low enough to warrant a transfusion yet, I’ll have them drawn again and an eye kept on them going forward. 

In other news, I was showing him my radiation burn (I swear it’ll heal someday…) and his jaw dropped. “Meghan. Do you have pictures of these skin lesions from before starting Afinitor?” Sure, somewhere. “These look significantly less inflamed than before…and didn’t you have more?!” Well…actually…

I had mentioned to Joe this past weekend that some of the cancer bumps on my chest seemed to be smaller and no longer red. I expressed that I didn’t know if it was my mind messing with me but the bumps on my side seemed smaller too.

I reached up and touched my right neck and said, “The Nurse Practitioner is having my scans include my neck at the end of the month. I had a swollen lymph node that could be easily felt. I can’t feel it today.” He reached up to feel my neck. “And it was there for a while?”  Yup. I looked up and he smiled brightly.

There are no words. There are MANY ups & downs in this life with cancer. Lately, it seems that I am fighting to find the right drug. Maybe, just maybe, this is it. He shared a story with me about his trip to the San Antonio Conference last month. One of the oncologists gave a speech about one of his patients that was triple negative and had been on Afinitor for the past 2 years. I smiled and said, “Well, I want to be number 2.” Please?

Who knows if it’s working. I had my tumor markers drawn today and I’ll have scans at the end of the month (though my doctor wouldn’t necessarily stop this drug at that point because it wouldn’t have been long enough…depending on the scans, of course) but today, this appointment brought me to tears. I want to be number 2. I want to be the reason that they start giving this drug people like me, who are triple negative, because it is saving lives. Because it will save mine. I hope & pray.

So today, I will snuggle my sweet boy and kiss my husband and believe that perhaps I have found a drug that will help me outlive the time I’ve been given.

Spread the love, my friends. Today is a good day.