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!

A Tuesday update…and gratitude

I can’t help but laugh at the fact that I caught my first post-chemo cold this time last year. I have yet again caught a cold. Jacob had it early last week, then Joe so it was only a matter of time before it made its way to me. The congestion is not awesome but thankfully I don’t have a fever so it just needs to run its course. I am also grateful that it is my off week so my body can fight a little harder this week to battle this virus!

Today was a busy day. I had radiation and met with the doctor afterwards as I normally do on Tuesdays. My skin is quite pink and peeling everywhere but my armpit is the most painful. Just about every time I move my arm, I am reminded of the radiated area. You don’t realize how much you move during your sleep! It wakes me up a lot but at least I fall back asleep. J The radiation oncologist says my skin looks great compared to when I first started – so wonderful to hear that! My skin nodules (breast cancer) are completely gone with the exception of the one that I had biopsied. I assume it’s scar tissue around the biopsy site since I can literally see where the stitches were. She wants to see me again on Friday to determine how I’m doing and if I should take a few days off after the 20 before doing the 5 boost treatments. She wants to focus on where the breast cancer on my skin was and my lymph nodes. It’s hard to feel the lymph node in my armpit right now but I would guess it is at least a sixth of the size that it was…barely even there! The lymph node in my neck can’t even be felt anymore. Such great progress. I keep reminding myself that a few weeks of pain and discomfort from this radiation is worth it to make this cancer disappear from those areas. And we are almost done – day 15 was today!

I met with my oncologist afterwards and we had a nice long chat with my million or so questions. J It was a nice conversation and I was greeted with a big hug. My feet feel significantly better today, despite the blister that formed from hand & foot syndrome over the weekend. The oncologist said that since it started at the end of chemo that is a sign that it was time for the week break for sure. We will see how the next round goes and then reassess whether or not to lower the dosage. I am hesitant to do that only because it appears to be working. At the same time, why do I want to subject my body to a higher dose if I don’t need to? Oh, the things to consider… I’ve been having lower back pain since about the time that my feet started hurting. This is obviously concerning because I have cancer in my pelvic bones. It is significantly better today and yesterday though. I spoke with my oncologist about it and he said it was likely a result of my white blood cell count causing bone pain in that particular area. That was a previous chemo reaction too, yikes. It was pretty painful so I am curious if I have it with this next dose as well.

My blood work also looks good, considering it is my off week. While my white / red blood cells, platelets and hemoglobin are technically low, it’s good news that they are higher this week. I certainly don’t want to take any more time off than I need.

So today, my prayers are of gratitude. I am grateful that this chemo appears to be working. I am grateful that despite the side effects of radiation, everything seems to be responding to it. I am grateful for a team of doctors that I truly appreciate and that they whole-heartedly support (and encourage!) every second opinion that I receive. I am grateful for today because despite this cold, I am here and able to snuggle my dear husband and little man.

I am also grateful for the gift of time…in so many ways. Stay well, friends – and spread that love!

Day 1, dose 1!

My inability to sleep last night had me up just after 4am, my mind racing with things that I could do. After trying to force myself back to sleep, I decided to tackle my list and spent the next few hours accomplishing many of the activities for the day. Mostly computer work, I zoned out in the living room to try and get a little ahead of the paperwork, appointments and shuffle of this diagnosis. 

A little after 7am, I ventured back into the bedroom. The sun was just over the horizon, streaming in through the bright half circle window above our bedroom window. My sweet husband and our little man were snuggled together, inseparable in the morning light. I stood over them for a while; careful not to wake them and yet so conscious of that very moment in time. I know it is fleeting but it is mine. They will never be that old or that young again. They will never be quite so innocent and yet completely niave. I will hold the moment – and them – dear, always.

This morning I took my first dose of Xeloda after a breakfast of fresh fruits. I’m washing it down with a fresh juice, courtesy of last night’s meal prep assistance. I don’t know what the effects will be but I am optimistic and feel that this medicine will help kick my cancer to the side for now. That is my prayer today.

Much love, friends. Enjoy every moment and spread the love, always.