I’ve been quiet for awhile here on my blog. Actually, I should be more specific: I’ve written several entries but had to make them private so as not to alarm those who are near and dear to me. You see, I started this blog as therapy, as writing has always been a way to deal with various issues in my life. It has helped immensely, but unfortunately, it’s not all sunshine and roses; some days are downright lousy. It’s been been days like those that I take to the blog, get it all out, hit the send button and feel SO much better, not realizing how many people I just worried sick….until my phone lights up like a Christmas tree. So, the last few entries I’ve written I’ve made private, but I by doing so, I noticed that I just didn’t have that sense of peace that I usually do. For me, hitting that ‘send’ button was like letting the balloon go; I had just blown all of my worry, sadness, fear into this balloon and hitting the ‘send’ button just took it out of my life and out of my heart. I felt free. Keeping my entries private felt as if they were still a part of me. I felt a prisoner to them. So here I am again. I’ve made a deal with my family that if I need them or if I have a seizure or a medical emergency, I will call them and they agreed not to panic over my entries. So. Here I am again…..with writer’s block.
I feel tired. I feel like a rope in a tug of war. I feel like I’ve been blindfolded and spun around and around and pushed off the edge of the Grand Canyon. I feel like I do not have a destination. I feel completely lost. For the first time since my diagnosis 6 months ago I feel the weight of the fight dragging me down. I feel like I’m losing ground. I’m in a nightmare of voices all saying “Do this. Do that. He’s wrong. No, he’s wrong. You’re wrong. Take this drug. Don’t take it. We’re changing it. We need more blood. You need more tests. You could have a brain bleed but then again, you may not.” Yesterday was the first day I felt like I lost my will to fight. I’m strong. I know it will come back. I just need to cry, but I’m strong so I hold it in.
One of the many things I’ve learned since being diagnosed with brain cancer is just how big the cancer community is. We hear a lot about very common cancers, such as breast cancer, Susan G. Komen, and what the pink ribbon symbolizes, but rare cancers, such as mine, and mesothelioma are in dire need of awareness as well. Today is Mesothelioma Awareness Day and I am proud to use my blog to help educate those about this rare cancer and maybe help prevent future diagnoses. You may find a wealth of information here:
I had a seizure today. They call them seizures anyway, these facial contortions I used to get before my surgeries. I’m on two different anti-seizure medications and between those and the two brain surgeries I’ve had, I thought I had them under control. Even my doctor was confident! So confident in fact that he decided I didn’t need two different medications to control them. He said that after my second surgery the tumor was so small, there was no need for all of that. Well, one of those medications I take 5 pills every morning. I was instructed to wean myself off by cutting out a pill every 4 days. I’m a big ole’ baby when it comes to the “possibility of xxxxxx when weaning so-and-so”, so I chose to err on the side of caution and wean even slower than the evey 4 days he recommended. I chose to go a whopping 7 days between weaning! This was only day 6 and I was still only 1 pill down from my usual dose. It started out as a numb sensation on the left side of my tongue. I know that feeling very well. A warning like no other. I sat here at the kitchen table and waited for it. Sure enough, my tongue started pulsating slowly and then picked up the pace along with my heartbeat. I was scared. The last time this happened was after my first surgery and led to an MRI that showed progression of my tumor and led to my second surgery. The pulsating increased and my throat started going numb. My ability to swallow disappeared as the seizure took control of my cheek. My son was downstairs and I was afraid he would come up and witness the spectacle. I grabbed a magazine and held it in front of my face to hide the convulsion, watching the clock….3 minutes in. I felt saliva start to pool in the back of my throat and my instinct to swallow was so overwhelming but I just choked when I would try. A little after 4 minutes my facial muscles relaxed and I just sat there and took some deep breaths and slow sips of water. My pulse was racing. My mind was racing. What did this mean? Had my tumor grown in the last month? Is 6 days without 1 of my 5 pills REALLY going to bring on that bad of a reaction? Is it possible to feel good when you’re dying? How many surgeries can they do before I’m out of luck? I don’t usually allow myself these moments to think about the what ifs, but I admit it. I’m scared. I’m really, really scared.
So last time I blogged I was basking in the tranquility of my escape to Lake Tahoe. Glad I had that moment in time cause little did I know then that I was in for a 10-day hospital admission right after my next round of chemotherapy. How’s THAT for a welcome home?!?
So there we were on Sunday morning, July 28th, excited to go to San Jose to celebrate my dad’s birthday and spend the day with my family. Since my diagnosis, these occasions have become extremely important to me as I realize that another birthday celebration is not a guarantee for me.
I’d been worried a bit by some shortness of breath I’d been experiencing and it seemed to be getting worse. Just turning over in bed would increase the rate of my breathing. When I would walk upstairs and climb into bed I would sound like I had just run a mile as I gasped for air. I’d been warned by my neurosurgeon that my type of cancer made me more prone to blood clots and that shortness of breath was a symptom. I also knew, thanks to my years as a medical transcriptionist, that this can cause sudden death and not to ignore the signs. I looked at the clock and figured if I could get to the Urgent Care at 10:00 when they opened, I could easily get out of there for the 2-1/2 hour drive to San Jose for the 3:00 party. Everything went according to plan until the doctor said he wanted me to go to the ER (!) for a CT scan to rule out a pulmonary embolism. CRAP. Everyone knows ERs are freakin’ black holes; you go in youthful and come out downright elderly. I looked at the clock and knew the party was not looking like it would be in my future . As part of my last ditch effort to get the heck outta dodge, I asked the doctor, “So….ya think this is something that can wait until tomorrow?” He looked at me incredulously and said, “Um. No.” That sealed the deal. Happy Birthday, Dad. :( To the ER we went and eons later it was confirmed that, yes, I had a pulmonary embolism with blood clots in BOTH of my lungs and that they were going to admit me. The thing was, I felt perfectly fine. I guess I was so used to not breathing well, it felt like my normal. I felt ridicuous being in bed in the hospital and I was so disappointed to be missing my dad’s birthday.
Deep inside I knew I did the right thing and was lucky to have been diagnosed. That was never more clear than when I woke with a start in the middle of the night coughing so severely I thought I was going to be sick. I was disoriented and knew I was in a very bad place, physically. I called for the nurse and when she came in I asked for something to get sick in and she asked if I was ok. I remember saying, “No. No, I’m not okay.” The next thing I knew there were about 8 doctors and nurses in my room scurrying about with one doctor in particular barking orders. I recall a nurse relaying my temperature as 101.5 and as soon as the doctor listened to my lungs, he put me on the bi-Pap machine and said, “Get her to the ICU” and something about pneumonia. So now, not only did I have blood clots in both lungs, I had pneumonia. I now felt like I actually not only belonged in the hospital, but like I belonged in the ICU. I finally realized just how much I lacked oxygen. After 2 days in the ICU they moved me back to the floor but took me off of steroids and oxygen cold turkey and I took a nose dive to the point where they wanted to put me back in the ICU! Some brilliant doctor re-started the steroids and the bi-Pap and I stabilized. They learned they needed to taper both, which they should have done from the very beginning, which I’ve read is the standard protocol. Not mentioning names, but some people need to go back to med school! After 10 days I was FINALLY discharged and not a moment too soon. One more day and I would have checked myself into the Psych ward!
Looking back, I’ve never ignored my symptoms and it’s always turned out to be a good thing; this time was no exception. Had I put it off, I would have ended up in an ambulance at my parent’s house in San Jose; not the birthday gift I’d ever want to give to my dad.
Mid-July signifies one thing for our family ~ The American Century Golf Tournament on the shores of Lake Tahoe. No, we aren’t golf fanatics; in fact, speaking only for myself, I couldn’t tell you the rules to save my life (pun intended ). We go for the beauty and the fresh air that only Tahoe is known for in our “backyard”, the sports celebs who are always so friendly and fun to talk to during their practice rounds Tuesday through Thursday, and the elusive royal flush that I always tend to chase and never seem to get! Then we get the heck outta dodge on Friday morning when they start keeping score and everything gets serious. Where’s the fun in that?!
This year, hubby kept thinking we we would have to skip the trip due to my diagnosis, fatigue, blah, blah, blah. I told him, “If I can take a nap at home, I can take a nap in Tahoe!” He shrugged as if to say, “Good point!” Of course! As if I ever have any other?
Those few days were better than any medicine for my mind, body and spirit. Soaking in the pure beauty of Lake Tahoe and its endless blue and green colors, the snow-capped mountains covered with pine trees, their scent drifting with the slightest breeze; finding a shady spot on the course, planting myself on a blanket and just watching the pairings go by. It was pure relaxation and restored my spirit. I never felt the need for a nap, though I did get a bit sleepy from the fresh air and the altitude ~ nothing that a late afternoon lounge by the pool with a good book didn’t cure! I followed this routine with a long bath, room service, a good movie and sweet dreams of my beautiful backyard playground, Lake Tahoe, so grateful for its cleansing, refreshing effect, which gave me the strength to go home and face round 2 of chemotherapy.
GO TEAM JEN!! And……that’s about as cheery as this post gets! LOL
June 25, 2013 was a lot like that song you sing on the last day of school ~ you know….”No more teachers, no more books..”, only mine would go something like, “No more steroids, radiation or balding, let’s go Jen, your maintenance is calling!” Okay, so I’m not a poet, but you get the drift. I was ecstatic. My last day of radiation and chemotherapy. I felt like I had been on that table for 6 years, not 6 weeks! I was just three seconds from my freedom when the nurse stopped me to let me know I just needed one last meeting with the radiation oncologist before leaving. I was escorted to an exam room and asked the typical questions of any symptoms. Mine were the same as they had been but worse that particular day ~ slurring of speech and loss of smile on my left side. My doctor happened to be out sick but the nurse felt that my symptoms warranted an urgent phone call to him. Not five minutes later she returned with a bright, shiny needle to POP my balloon of elation. ”The doctor wants you to go to the ER immediately for an MRI. You have completed all first course radiation and chemotherapy and your symptoms are progressing.”. While she was at it she should have kicked me in the shins too. I felt like a tot who dropped her ice cream cone. I was beyond deflated. I slid off the exam table and shuffled my steroid-less deflated butt to the car for the 2-minute drive to the ER. Unbeknownst to me then, I would not be returning home for 9 days.
I had my brain scanned in the jack hammer machine AGAIN and was admitted to the hospital when it showed obvious progression with deepening into the brain. Once again, my beautiful family converged as the angels they are and wrapped me with their love and light. That was the only glimmer of positive I could muster our of the situation and I held onto it for dear life. I looked high and low for some optimism…anything….but nothing came and I pride myself on my perkiness, dammit! I was demoralized.
The next morning proceeded to get worse when my neurosurgeon spoke with a doctor outside of my room not knowing I could hear him. He called my prognosis “dire” and mentioned discharge even though we knew another surgery was necessary. I’m so thankful my family was there to speak on my behalf and demand transfer to UCSF rather than discharge and walk in through the ER. Could you imagine?? ” Excuse me, ma’am, sir, miss, I have a brain tumor and I need to be admitted for surgery by Dr. Berger when you get a minute. I’ll have a seat right over here when you’re ready to admit me.” Sheesh! The neurosurgeon at UCSF was already familiar with me, my case and ready to go! Fortunately, Dr. A could think like a patient and not just as a surgeon. He was able to put himself in our shoes and understand that unbearable drama. He made the arrangements and after several days of gathering insurance approval, a surgery date and an available BED, I was transferred to UCSF to have my second craniotomy by world-renowned neurosurgeon, Dr. Mitchel Berger for 5-1/2 hours while I was awake. This was necessary to be sure I woke up with full use of me left arm and hand. By far the MOST uncomfy thing I’ve ever been through in my entire life. I felt every tug of every suture, every THUNK from all 47 staples, the cautery from the “tack drill”, which sounds 100x worse than a dental drill and I’m pretty sure I saw a flame outside the blue tent that surrounded my well-bolted head. Yep. It was bolted. I tried moving. On accident. I’m usually a very cooperative patient, but the doctor got a little agitated when he heard a code on another patient of his while torquing a screw into my head and that was unpleasant. I gave myself a pass.
The surgery finally ended and I was taken to the ICU to “sleep” at a 65-degree (more like 90-degree) angle. All I remember was ice-cold orange juice and hot coffee in the morning. Life’s simple pleasures.