Two years, third diagnosis

I’ve had a hard time starting this post. Usually the emotions and the words just spew out like the green pea soup in the Exorcist. However, with as much that has happened in the last two weeks, I’m finding it hard to find much of anything to say. (Let’s note that this may be a first time occurrence in my lifetime.)  

I guess I should start with a little flash back. 

• May 27, 2020 I had my second cancer diagnosis when I found my breast cancer had metastasized into brain mets.
• May 28, Craniotomy to remove tumor. 
  
• 3 rounds or radiation over a weeks time. 
• July 17, Clean MRI showing no signs of any cancer remaining. 

Coming back to the present time...The time where I am supposed to be coping with my new diagnoses of stage 4 metastatic breast cancer, while also trying to get back to my normal life as if I didn’t just get a ball and chain attached to my ankle for the rest of my existence ... the PARP inhibitor that is supposed to be my best chance at avoiding another reoccurrence has me bed ridden with no end of relief in sight. After weeks of intolerable side effects we lowered the dose hoping my body would tolerate it better. My husband and doctors both reminded me that quality of life is what is important right now. And being in bed sick every day is not living. Some of the side effects I was previously experiencing were getting better while others remained. I probably complained more on this medication than I did while receiving chemotherapy. Because the side effects were all over the map (I mean ALL OVER. Like, from North America  to Australia with about 500 stops in-between.) I was contributing everything that was slightly out of the norm to be an effect of the drug. August 12th I woke up and my vision was extremely blurry. At first I thought it was typicalmorning blur. I was still waking up, I had sleep in my eye and I hadn’t yet adjusted to the sun shining through my window. I gave it some time and began to grow concerned when I couldn’t make out the words on my phone. The closer I put something to my face the more hazy things looked. Before I realized it I started to see double. Usually more of something is better, right? But all of a sudden I had four hands! For a brief moment I thought, how cool! I can multitask now! Then I snapped back to reality and realized something was really wrong. This was a side effect of the medication I had never experienced before. With a call into my oncologist, I was asked to come in within the hour. Remember a couple posts back when I said I began to pack some overnight necessities in my purse any time I visited the doctor, because I had been suddenly admitted on more than one occasion? Well this time I didn’t. I truly believed that with a clean scan three weeks prior and a medicine that was out for vengeance, that nothing was seriously wrong. How many times have you heard me say, “wrong!”? Because...WRONG!! With a failed neurological exam I was sent from my onchologist to the emergency room. Still thinking I was maybe just dehydrated from my medication , I expressed to my mom how I felt like it was a waste of time. But, better safe than sorry. My first exam was a CT scan that resulted in nothing. But because I had failed a portion of a second neurological exam and pupils that wouldn’t react to light (one being the size of a dime and the other the size of a pin needle), I was sent for an MRI with contrast, an x-Ray, EKG and lots of blood work. Moments before the ER doctor came in (almost 7 hours into our visit at the emergency room) I expressed that we wasted an entire day at the doctor for no reason and I was ready to go home. My mom and I both noted that neither of us thought anything was really wrong and felt at ease with the results from the earlier CT scan. My mom has said time and time again that she truly believes that my cancer journey was done. The last brain tumor was it for me. And while I would forever have the diagnosis, that I was done having active cancer use my body as a vessel to grow.  Glass half full, I too believed that God gave me what I could handle and he knew I couldn’t handle anymore. The test results were going to be fine. WRONG!! I have to stop assuming I know what is going to happen next. Because before I knew it the ER doctor was very casually saying the MRI showed something more than the CT scan and exposed a cerebral venous sinus thrombosis as well as a small tumor located in the right frontal lobe of my brain. Sitting there in shock, I turned to look at my mom who had lost all ability to keep her composure as tears ran down her face. Every ounce of hope that she had that my cancer story was over, was washed away instantly as her face flooded with fear. Three weeks. My body was NED (no evidence of disease) for three weeks. What a joke! I had no words. I had no emotion. I had no response other than a blank stare of disbelief. The only form of expression that I could find was worry. Worry for my mom and her broken heart in that moment. Worry for my husband when I would have to call and tell him that the last two months of chaos was starting over. Worry for my son Raylan as his childhood would be disrupted once again by my illness. I felt zero emotion for myself in that moment. There was no anger or fear or sadness for myself. Only for those around me who had to endure this load of crap, once again. To this day, as I sit and write this, I’ve had zero emotion as it pertains to this new diagnosis. It could be because I’m going through the motions of moving into our new home. A time that is supposed to be joyful and instead is interrupted by a parade of unexpected doctors appointments. It could be because I’m utterly exhausted with trying to figure things out and make a plan when my plan fails every time. It could be because I’m in disbelief that my body managed to stay cancer free for only a measly three weeks. Long enough to make me think I won my fight, again. Sparing all the boring details about the 400 tests I was put through, I will give some reassurance that in my four days spent in the neuro intensive care unit, no cancer was detected anywhere else besides my brain.  I once again struggled with my IV as they ran blood thinners into my veins. Because of the constant occlusions of the IV and the amount of blood having to be drawn every few hours, the nurses decided it was best for them and myself to get a midline picc. I didn’t have a clue as to what this was but anything was better than the poking and prodding of trying to find a good vein that could withhold the amount of work it was being forced to do. On day two of my stay, after being woken up every two hours to preform neurological test after neurological test, an IV team rolled in with a cart that looked as though they were getting ready to preform surgery. They covered me with sterile blankets, dressed themselves in sterile gowns/gloves/masks and caps and asked my mom to leave the room because a “sterile proceedure” was getting ready to take place. I was terrified in that moment. With as much as I’ve been through you would think little things like a needle wouldn’t t get to me... but boy oh boy.  After a shot of lidocaine burned through my veins, my arm was numb and I felt a mound of pressure on my arm. A few tugs and pulls later I had a midline pic in my arm that would serve as my main IV. Because I was on blood thinners I was warned that it could bleed a little bit and that it was completely normal. Three dressing changes later and I was still bleeding through the bandages. If you get woozy at the sight of blood I would recommend scrolling past the picture of what I call my shark bite, pretty fast. 
 Not sure why I thought this was better than attempt after attempt of an IV but there was no going back at that point. During my ICU stay, it was determined that blood thinners would be the best option to try to dissipate the thrombosis (blood clot) on my brain. Within a couple hours on blood thinners my vision became better and better.  And if it wasn’t for this blood clot we would not have found the tumor for two more months when I was scheduled to have my next check up scan. If it grew big enough to find in three weeks,Imagine how much ot would have grown in 2 more months.  The tumor was found to be deeper in my brain than the previous one and was about 5mm. The radiation oncologist and neurological surgeons team felt confident that the best plan of action was to treat the tumor with radiation. No surgery. This was a relief as the thought of another brain surgery, two and a half months after the last one made me want to crawl in a hole.  After getting my vision back to normal and set up with the appropriate medication to take home, I was released from the hospital within two days of closing on our new house. Making that my priority, I focused on moving day to keep my mind off of everything else going on. I knew that if I took a moment to stop and breath and try to comprehend my third diagnosis, I would lose my mind. I would crumble and break to a point of no return. So to keep my fight I pushed myself in packing and moving my family to our new home. To make new memories.   
So now, we are in our new house. The stress of moving is becoming less and less with every day and every box that gets unpacked.  But the stress of doctors appointment after doctors appointments continue. A new radiation mask has been made for my one round of radiation on September 2nd that is believed to knock out the entire tumor. The PARP inhibitor that I was taking prior to my hospital stay has been stopped temporarily with the goal to pick it back up when radiation is over, at a much lower dose in hopes that my body can tolerate it more. I’m expected to be on blood thinners for 3-6 months in attempt to dissolve the blood clot and was told that there is little research of the effects of radiation while on blood thinners. However, because it is important that we move forward with both, without wasting any time the doctors feel as though whatever risks could be a factor, are risks worth taking. It is a lot. It is a lot to process just months after an invasive surgery and a lifelong diagnosis of stage four metastatic breast cancer. It’s a lot when we are moving into a new house. It’s a lot when I have toddler with energy that never settles.  It’s just a lot. And if it’s because I haven’t had time to focus on my third cancer diagnosis in less than two years or if it’s because I just don’t want to acknowledge or accept it... the emotions have failed to follow. Good or bad, that’s where my head is at. I’m sure one day, when I least expect it, the flood gates will open and I will have my break down. But for now, just weeks after I was deemed to be in remission once again, “numbness” is the word of the day.  These blog post seem to get a little less funny and positive and a little more somber and factual as time goes on. Writing was a great outlet for me to express my feelings in the beginning of this journey. But as life continues to throw curve balls my way, this blog becomes more of just a place to keep you all updated. I will continue to write in hopes that I find my wittiness and humor again. So if you continue to read this and think... gosh she is depressing, than try living it! Kidding. Kind of. But really, with time I will laugh again and I will find the positive humor that got me this far. I’m still alive and that is what I have to focus on. I have to focus on living. Because as bad as it may seem, I still have so much to live for. Don’t worry. I’m a little less funny. But I’ve not given up.