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?! 😁

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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.

Not quite a million…?

I was a little anxious this morning to pull up my medical history for 2016. I watch the charges that come in regularly, the discounts that are given to insurance companies and what is actually paid. I am curious as to the different charges that each office bills and I want to make sure there aren’t any denials that sneak by me.

Let me first say that I am incredibly blessed to have insurance. Yes, I have an out-of-pocket expense but there is a cap on it each year. My medical insurance coverage is different than my prescription coverage. For some reason my prescription coverage is not available for me to pull today so I’ll do that another day and share it for sure.

All of the charges have not come in for 2016 and all of them have not yet been processed. But as of this morning, my insurance has been billed $896,584.71. This is the retail cost of every charge. If I did not have insurance, this would be the bill (although separate from each provider) that I would be asked to pay.

There was an insurance discount, which was $548,532.79. This is the discount amount contractually agreed upon between my insurance and the in-network providers.

The amount that my insurance company paid, which excludes my out-of-pocket costs, is $261,190.61. My deductible and coinsurance for 2016 was $3250 for medical expenses.

This number astounds me. Again, I am incredibly grateful for having coverage. Even with my out-of-pocket expense, it’s nowhere near what is billed to my insurance company.

Life with cancer is not easy. As I mentioned the other day, every headache, back pain or cough is cause of concern. Scans are frequent, I have regular follow ups with my oncologist and radiation oncologist and then I have another half dozen or so doctors that follow my care. And that doesn’t even include the oncologists at the different cancer centers that I have visited. Thankfully I can communicate with them via call or text for the most part now that we have established relationships. And then there’s the regular visits for wellness exams, physicals and colds.

Then there’s the day-to-day cost of this disease. Outside of prescriptions (which I will cover when the website has the information again), there’s the protocols that I follow, which are supplements that I take 3 times a day based on meetings with an alternative medicine doctor (the visit and the supplements aren’t covered by insurance). That retail cost is somewhere around $1500 every 8 weeks. I have been using Band-Aids, gauze and saline for this radiation burn since August. The radiation oncologist provides most of the gauze and the saline and I buy the Band-Aids to cover the wound. There’s stomach medicine that I take regularly. Sometimes its anti-nausea, sometimes Imodium but mostly Senokot. There’s the lotion that is needed for the areas of my body that have been radiated ($14 for 1.7 oz, mixed with organic Calendula oil which is $10 for 1 oz). Then there’s the lotion that is needed for my feet, especially with taking Xeloda previously ($27 for 4 oz). I use a diffuser filled with different essential oils that run anywhere from $10 to $100 per bottle. I have to use special toothpaste (biotene). In 2015, I bought wigs to help cover and keep my bald head warm. I also previously and more recently purchased bathing suits that can hold my prosthetic. Oh, then there’s the cost of driving around town to and from all of these appointments.

My diet is significantly different now too. I buy organic as much as possible and eat a lot of fruits and vegetables. Juicing and smoothies are wonderful but come at a cost. I feel better physically eating what I eat now and wish I had started it long ago.

Then there’s the travel to different centers. Though we try to make the most out of it by sight-seeing, the reality is that we are traveling in the hopes of finding a doctor or treatment that can help prolong my life. These visits come at a cost, emotionally, physically and financially.

It’s a full-time job in itself.

I am sharing this information because it is simply the reality of cancer. These are just the things that come to mind as I type and I am sure that there are many other costs that I’m not including. Are some of these things that I am doing to help me live a longer, stronger life? Yes. Are some of these things that I am hoping will help me outlive my prognosis? Of course. Are some of these things necessities? Absolutely.

What do people do that cannot afford these costs? Let’s say that the protocols and the organics and the lotions aren’t included and it is simply the cost of treatment…treatment that will hopefully work to save their life. What if they don’t have insurance? What if they can’t pay the cost of care? It scares me. Cancer is not something that any of us ask for or expect – especially at 31. But it’s here and we make the best out of it while we can. But what if that best isn’t an option because you can’t afford care? It terrifies me. I don’t know what people do.

What if people can’t work? I have been blessed with the ability to work throughout the last year and a half of treatments and surgeries. But I won’t lie, it takes its toll. There is continuously a question of whether or not you will work until your life ends…or until you simply can’t manage it anymore. Life is exhausting without cancer. Add in a family, a toddler, a life that you are trying to enjoy and top it off with cancer and you are bound to be in bed with your toddler at 8pm every night. But work is your insurance coverage and your paycheck is your ability to live the life that you want to live while you feel well enough to do just that. Is there really a choice?

I have been extremely blessed with financial gifts that helped to cover most of these expenses. There are so many people who care about us and want to help. For that, I am eternally grateful. I honestly don’t know what we would do without people like you.

This is the reality. I have debated on a post like this for months but thought it was important to share the realities that are breast cancer. And the reality that with metastatic breast cancer, those costs will never disappear. Each year, deductibles go up along with premiums and people like myself know they will reach their out-of-pocket expenses…likely in the first month. It’s not something that I can change and yet it causes a lump in my throat. I am SO GRATEFUL for another year of life and yet I can’t help but fear the restart of my out-of-pocket costs. The costs of cancer care is enough to break even the most financially-fit person. I bet with my prescription coverage and the other expenses that I mentioned, I did actually reach a million dollars this year.

This is metastatic breast cancer. This is Stage 4. This is our reality. But, we keep living. We make do with what we can and we don’t go without. And we choose to live. Despite the costs of treatment, of cancer and of side effects, we continue to enjoy this life that we are so blessed to have. And you all should to…enjoy each and every beautiful moment.

Here’s to 2017…and LIVING.

Today’s excitement

I’ve mentioned before that once diagnosed with cancer, every bump and bruise is cause for concern. I try not to be a hypochondriac but frankly, it’s better to get ahead of things when possible.

At about 4am on Thursday morning, I woke up from a terrible pain in my right side. It was worse when laying down and I noticed a rattling in my right chest when I breathed. Sigh. Again?! I was concerned that the fluid was back and texted the nurse first thing. She called the pulmonary doctor and he wanted to see me immediately. We drove down town and his office was able to do an x-ray in-house. The doctor listened to my lungs, reviewed the x-ray and indicated that there was not a single drop of fluid was in my lungs – YAY! The pain I feel in my chest is likely inflammation. Now that my right lung is expanding properly, it is rubbing against my chest wall. This is normal but since it wasn’t doing that for a bit, the rubbing is causing inflammation, which is causing the pain. It’ll eventually go away but I need to try not to lay on that side for a while. Whew! The doctor also mentioned that because there was not a drop of fluid, he would take it as a sign that the drug is potentially worked already. I’ll take it! Of course, when I was checking out the x-ray I had to ask all about the other organs that I saw. Nothing like a little anatomy lesson on a random Thursday, right? 😉

Shortly after that appointment, a headache began. It progressively became worse throughout the day and by dinnertime I was lying in bed with tears in my eyes from the pain. I have suffered migraines before but thankfully it’s been a while, excluding my brain tumor. I ended up using a heating pad on my head, turning off all of the lights and taking medicine that knocked me out so I slept for over 12 hours. I didn’t have a headache throughout the night but once I woke up, I could feel it creeping back in. I texted the nurse and the doctor this morning and asked if it could be a side effect of Afinitor, since the headaches just started. It’s possible, though not a common side effect of the drug. It’s listed on their website but not something they see often. An urgent CT was needed and after a quick call from my doctor’s office, they could see me in an hour. So…off we went. I had hoped to use my port to give my veins a break (apparently the script needs to be written a certain way for that, which I learned recently and was done today) but only a nurse can access my port and I wasn’t up for waiting around so they used my veins. Not a big deal, but it hurts a little more and I worry about scarring since I’m limited to one arm.

I try not to worry about scans in general because I can’t change the results (no studying here!) but this headache is intense. Despite medicine, it still creeps in and waits around for the medicine to wear off so that it can take over again. It’s rough. Thankfully, the CT scan was listed as STAT and they called my doctor with the results within an hour. He called me happily to report – STABILITY! No cancer cells were found in my brain. I can’t express what a relief this is. With the intensity of these headaches, I thought for sure it would be a tumor.

So what in the world is causing them?! Well, it’s possibly a side effect of Afinitor, which sucks. So I’ll see the neurologist again and talk about how to keep these headaches away in the hopes of continuing on with this treatment plan.

In other news, my oncologist shared that he received a call from a pharmaceutical oncologist about the request for Afinitor to be covered under my health insurance. They were sympathetic to my case and actually indicated that they are working on medical evidence that supports this drug being used with my type of cancer (triple negative). Just a little bit later and I received an automated call indicating that the appeal process determined it WOULD COVER the cost of this drug! WHAT?! I wanted to confirm what I thought my ears heard, so I called the specialty pharmacy and had them look me up. Sure enough, the appeal was APPROVED!! YAY!!! For some reason, I have to go through another approval process (despite many questions of my trying to understand their process and them repeating the same thing they just said, I still don’t get it but that’s ok), which should take about 24 hours and then it should be officially approved and on its way to me. WAHOO! Though I have samples, this news is incredibly exciting!

So, though it’s been a crazy few days, the good news puts me at ease. My head is clear (well, aside from my slight craziness), there is no fluid in my lungs and my treatment drug is approved.

Now, I breathe. The holidays are literally around the corner (“Just two sleeps ‘til Christmas!” – per Jacob) and I plan to enjoy these moments with my family. Yes, the headaches suck but I’m doing my best to combat them so they don’t interrupt my days. I am breathing a massive sigh of relief at the last two days and I am so glad that I can rest easy over this weekend, knowing that my body is doing all that it can to fight back this disease.

I hope you all take today to enjoy each other, your family and your loved ones. Though all days are important, this holiday is special and should be treasured along with all of the other magical moments that you have in your life. I wish you all nothing but peace, happiness, laughter and love this season, and always.

Thoracentesis

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

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

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

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

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

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

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

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

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

Pleural effusion…?

This morning I went for my monthly Xgeva injection. While waiting, I texted my oncologist and asked if I could stop down for the rest of the results (they are only a floor away). He popped up to visit me while I was waiting. My chest CT came back and shows that I have fluid around my right lung called pleural effusion. He was quite surprised that I am not symptomatic, especially regarding shortness of breath. He was also surprised at the results, along with me.

Pleural effusion is concerning, though we are not entirely sure where it came from. It is possible that it is a result of radiation, though the chance is only 2 – 3%. It has been about 12 weeks since I completed radiation to my right side but it was significantly radiated (hence my still-open wound!). There is an assumption that the pleural effusion is a symptom of cancer. In some cases, it would make sense to wait it out and see what happens at the next scan. But with me, waiting isn’t a great idea. It’s best to determine what’s what and make a decision. We absolutely don’t want progression!

Similar to the way a bee sting causes swelling around the skin, it is likely that there are cancer cells floating about and they are causing the fluid to form around my lung. I also have “opacities” bilaterally in my lungs and my radiation oncologist suspects that it is scar tissue, as does the radiologist who read my report. Aside from the fluid, my lungs look “really good” and the rest of me is stable.

So what now? Well, it seems we are at a bit of a turning point….crossroads…something like that. 🙂 We don’t know exactly what is causing the fluid so I have requested a biopsy to confirm whether or not the fluid and lung lining is actually metastatic. Despite my mind being eased either way, I think it’s important to understand whether or not I actually have cancer surrounding my lungs.

My local oncologist recommended to stop Xeloda and begin Affinitor, though it will be a struggle to receive approval through insurance companies in the meantime (that’s a whole other level of frustration). They gave me 2 months of samples as well and we discussed his visit to San Antonio for the national breast cancer convention last week where there were presentations about Affinitor being used with triple negative breast cancer. It is my “off” week for Xeloda anyway so I have time to make a decision and have additional testing done before I meet with my oncologist again next week. No rushing here.

I have reached out to the different centers that I have visited, uploaded my recent scans and I am waiting to hear back. This is, quite literally, why I met with each and every one of those centers. They are some of the best oncologists in our country and I value their expertise along with my local doctors. I know MD Anderson doesn’t recommend Affinitor, however the other centers consider it to be a “reasonable choice”. I have many questions for all of them and I am anxious to hear back from them, especially after I know the results of the biopsy. That will be a key point and decision maker.

It is possible, though unlikely, that this is a symptom unrelated to cancer. If so, then there is still a decision to be made because we need to determine whether it is a side effect of radiation or Xeloda (the chance of it being from Xeloda is even lower than radiation) or none of those. If it is metastatic, then a treatment change is needed and next steps need to be decided. What those are? Honestly, I am not yet decided.

I do have skin nodules, though they are still not measurable enough for a clinical trial. My bones are stable – yay! Though they can’t be used for a trial either. I assume fluid, even metastatic, cannot be used as well. So a trial is not an option currently. I am hesitant to do IV chemo because, well, I don’t want to just yet. I know it’s there and I will need it eventually but I am not quite ready for that. One of them is more tolerable than some of the others but all would require me to lose my hair and well, I like my hair right now! 😉

I’ll have my tumor markers done again next week but they were higher than normal range when done two weeks ago. I was optimistic that they were possibly up farther and actually on their way down because of the Xeloda break (like before when I initially started) but this fluid makes me question my logic on that.

So next step is a biopsy and awaiting to hear from my other oncologists for their recommendations. I was hopeful that I wouldn’t need to make any decisions around the holidays but frankly, progression is worse so I am glad that my scans caught this before I actually have symptoms or major progression.

Is this the good news that I was hoping for last night? No but it’s not the worst news either. It just means that we need to have more answers before making a decision. 80% of my scans showed STABILITY. I like stability. Almost as much as I like it being gone entirely. 🙂