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.

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My fluid results

I met with the Nurse Practitioner on Monday and confirmed that the fluid in my lungs is cancerous. I don’t have progression in my lungs but I do have progression around them. So, time to change it up. What do you do? I don’t have a solid answer for that. I reached out to a few of the oncologists that I’ve met with. Including my local doctor, three out of four of them agree with Afinitor, while one doesn’t. In a perfect world, all would agree but we like to keep it interesting here. 😉

I expected these results but that didn’t make them any easier. I was silently hoping for a miracle. Though we didn’t have the best results, that doesn’t mean I am giving up. It means a change in treatment. It means that God has other plans. It means that although I don’t know what those other plans are, I am optimistic about the future they hold for me. I am looking forward with hopeful anticipation at what’s to come. There is a drug that will work miracles for me. Xeloda was not it.

The fluid around my lungs is concerning and we have to keep an eye out to make sure it doesn’t form quickly again. Since I have vacation in January, I will do an xray before it to ensure there is nothing floating around in there…especially since I did not have symptoms. I will have scans in another 6 weeks. That should give enough time for the new drug to start working on me. There is evidence to suggest that it will so we shall see. If there is significant progression, I will need to switch again but we will cross that road when it comes.

For now, I will embrace and enjoy this incredible holiday season with my sweet family. Happy holidays everyone!

Life is precious

I am a firm believer in spreading the love. That doesn’t have to be a “big” thing. When you have a dream about someone, share it. When someone is on your mind, tell them. If a memory pops in your head and makes you smile, make that person smile too. You never know if that person may need a hug, or a word of encouragement or even just a simple hello.

This past weekend, my family lost someone. She was even younger than me, it was completely unexpected and she was carrying her daughter in her belly. It’s heart wrenching and I don’t have the words to express how I feel about it all.

There are moments in life that give us pause and force us to reflect on the life that we have been blessed with so far. We need to rejoice in those moments. Yes, we all have regrets and sadness. But we all have happy times and joy too. Sometimes we need to dig a little deeper to find the good moments. Sometimes a small gesture or hello can change someone’s world.

Please keep my cousin and his sweet family in your prayers. They need to be wrapped in love through these times and going forward. We love you so much, David.

Keep spreading the love.

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. 🙂

 

Another blessing…

Although we went to the same hospital for my scan, my bone scan was in a different room. There was a weird beeping noise in the corner of the room. When asked, the technician explained that it was a Geiger Counter. It started going off because I walked in the room. Sure enough, as I walked up to it, it started beeping faster and louder. I sure was radioactive! I think back to my first PET scan, where I truly was radioactive. I can’t help but smile at feeling like a superhero. So much has happened since then and so much has changed. Superheroes may only exist in books and movies but I like to consider myself among them. I may not have their total courage, abilities and strength but I have their determination and fight. And that’s what I continue to need. I’m glad these scans are a reminder of that for me.

I had a brief text with my oncologist tonight. My chest CT is not yet in but the rest of my scans are. They show very little change! My bone scan picked up cancer in my left pelvis (bone scan was clear last time despite cancer showing on the CT) that it identified as new, however that same spot was reported on my last CT so it’s not actually new. Encouraging news!

I don’t know all of the details yet since all the results aren’t in but I’m breathing a sigh of relief at the news I’ve received so far. It means another scan is stable, another cycle of treatment can be given and another 6 weeks until I hold my breath once again. I’ll take it.

Thank you all for your love, hugs, thoughts and prayers. I promise you that they do not go unnoticed. I love you all.

Scans, scans, scans

Scanxiety is a very real thing. I thought for sure my last scan would show progression and it showed stability. This time, I worry once again about progression but hope for more stability. Knowing my tumor markers are up and there is recently a swollen lymph node in my neck is not helping the Scanxiety but I remind myself that I can’t change the results. I can only change my perspective.

I’ve been injected for the bone scan so I’m radioactive – though significantly less than a PET (4 times less) so I can still snuggle my sweet boy tonight. I’m drinking the liquid iodine in preparation for the CT scan of my chest, abdomen and pelvis. The iodine takes 2 hours and the radioactive injection takes 3 hours before scans. The CT is relatively quick, while the bone scan takes a bit longer since they are taking more pictures. I have a slight view of the computer screen during that exam (depending on the angle of the picture). It’s crazy to see the images of my body lit up in different colors. Plus Joe can come with me for the bone scan – bonus, company!

The *hope* is that I will continue to show stability and stay on Xeloda, doing scans in another 6 weeks.  I don’t have any new pain, though I have been lucky that the pain hasn’t been unbearable aside from radiation. Honestly, I want to make it through the holidays and my January vacation without having to make any additional cancer related treatment decisions. But, we shall see.

So for now, we wait for all the different liquids to work their way through my system. My doctor will likely call me this afternoon with the results. Though I can never truly prepare for the news, I know that whatever it is, I will work through it with faith and determination. 

Stay well, friends. Continue to spread that love!  💚