Spring Cleaning

Earlier this month Paul and I packed our bags, left our kids and dogs in other people's care, and booked a hotel room in Palo Alto so I could go through 3 days of Cyberknife treatments on 3 tumors in my thoracic spine. They looked like 2 on the first scans, but turned out to be 3, all facing each other with my spine in the middle. They had only grown slightly since making an appearance a couple of years ago, but that growth has been steady and measurable, so with Dr. Adler's help I got set up with his team at Stanford and had these suckers zapped. You may remember just last month I had 3 small and 1 long brain tumor all treated with Gamma Knife in Newport Beach, so after this treatment my grand total for Spring Cleaning would be 6 tumors in 2 months. Seriously? All of the treatments were outpatient, and Cyberknife specifically was very easy to go through. I called my treatments my "Radiation Naps." Paul and I even ran the Golden Gate bridge one afternoon after leaving the Cancer Center, and I only had about 3 days of nausea to remind me that anything had happened at all.

Now I am home, and it has been a few weeks. Paul is back to work, I am training for a 5K and the kids are ready for the end of the school year. My hair started falling out last month but as of now seems stable, however my scalp itself has a weird burn over it. It just hurts, and I can't pull my hair up or back, so I have given in and started sporting a loose soccer Mom ponytail. Every time I glance in the mirror I look sloppy, thrown together, and I am reminded of the truth I so studiously avoid, that the inside of my body doesn't look the way it is supposed to. That I am growing things from the inside out, and there is no cure, and if they keep growing they will slowly take over my brain and spine, and if I am lucky I'll have a sudden aneurysm or just go to sleep and never wake up, but most likely I can look forward to several years of being in a nursing home before I go. I get all of that from a sloppy ponytail. What can I say, its a gift.

Now over this weekend the nausea has come back, and I was hoping to loose a few inches of belly fat from it, but of course I am still hungry as always. My pot belly demands carbs even in the face of nausea. The nausea itself doesn't concern me, but then my brain stem started hurting. (You know you have NF2 when you say brain stem instead of neck.) Then my feet started cramping under again, and my head started ringing... louder than it always does. I whined to Paul that everything hurts, and he nodded sympathetically and went back to watching Smallville on tivo. I wondered aloud if MoFo could be swelling, or if maybe it was just the lack of sleep and abundance of junk food I had stolen from the kids' Easter baskets. Paul shrugged noncommittally, but he did gently rub my neck (brain stem!) until I relaxed.

I woke up slowly, and immediately realized the pain and nausea stuck it out through the night, and "I no feel good" as Mica would say. So I am most likely dealing with a bit of post-rad swelling, which could be a good thing because it means the treated area is reacting. I like to picture the tumor screaming a little as it visibly withers and dies. I'm wandering around half-heartedly cleaning my condo and spending too much time online playing Bejeweled, I can't face the world right now, it irritates me too much. I just can't with some people, I watch them and imagine what it would be like to have a normal life to take for granted and throw away as people seem intent on doing. To expect to live another 30 years (at least) and be able to hear and meet people and listen to music, and ride a bike without falling over, and wear a tank top without people asking what the hell is wrong with my back, and not wonder if a picture I just took will be put up at my funeral. What is it like to just live a typical life? To be asked how I'm doing and answer "Great!" without a hint of irony, to go an entire week without saying tumor, to spend a vacation somewhere other then the hospital, to cough without wondering if a tumor is causing it?

The fact is that this is my life, this is what I get, and I am doing the best I can with it. I fight, I run, I push, I write, and sometimes I yell and I cry. I am human and I am flawed. I'm not always a role model, but at my worst I hope to at least inspire people to question their perception of reality, and to remind people that life is complicated, but life is beautiful. We require pain to appreciate joy, and I may struggle but I am alive, loved, safe and blessed to know how amazing that is in a world like ours. The nausea will fade, but I never will.

Power Puff Girls & Chickens...

This might be a bit lengthy, so grab a snack and get comfortable...

After having MRI's at NIH in December I sat with Dr. Asthagiri (the doctor in charge of the study)and went over my scans. His impression was that I am stable, and if you are a regular reader of this blog you already know how I feel about that. All of my tumors are growing slowly, but surely. Mofo, the brain stem tumor which I had treated with Gamma Knife last year, has supposedly not shrunken but stopped growing, which is great news in itself. Dr. Asthagiri is a wonderful doctor, but like any other profession there will always be differences of opinion. When dealing with NF2 it does not seem like anyone has the right answer, each of the doctors just do their best to prolong our lives with as little pain as possible. My regular neurologist is Dr. Duma, and I adore him. He has been my doctor since 2003, and before that he was my Mom's doctor. He saved her life at one point, and I will never forget that. Dr. Duma is the one who has helped me to form my long term care plan for NF2. We radiate any tumor that has the nerve to threaten me as soon as we are sure it is growing steadily. This differs from how most doctors treat NF2. The usual rule of thumb is to treat a tumor only when it is symptomatic. The problem that I have with that is once the tumor is symptomatic and you remove it, you do not necessarily recover everything you have lost. Most likely, it improves a bit, but you are forever altered, another chunk of your ability stolen by NF2. Over time those chunks become gaps, until you have nothing left to give. It seems to me that if you have measured growth of a tumor over several MRIs, then you know it is growing and may as well treat it while it is small and less dangerous. At this point another debate comes into play. Many doctors do not think people with NF2 should use radiation to treat their tumors. They say it does not always work, which is true. What they rarely mention is that surgically removed tumors can grow back just as easily as a radiated tumor can, and surgery has much higher immediate risks. The other issue is that by radiating the tumor it can become cancerous over time. In a healthy person with a random tumor that is a significant reason to have surgery rather than radiation. I personally feel it makes more sense for a person with NF2 to focus on immediate benefits and consequences, rather then delayed possibilities. Radiation is an outpatient procedure, and when used by the right doctors on the right tumors it can be highly successful. I have had 6 brain tumors and 1 spine tumor radiated, all stopped growing, and most shrunk within 6 months. Dr. Asthagiri explains this by saying every person with NF2 has their own tumor biology, and mine seems to be very susceptible to the radiation. He admits I have been very lucky. (really!?) This is not the case for all NF2 patients, unfortunately. However, I have to make my decisions based on my own history, which of course includes having watched my Mom have surgery after surgery, each one taking more than it gave. Every person in my family with NF2 has gone the surgical route, and every one ended up paralyzed, Deaf, blind, and dead before the age of 40. It seems to me that I at least have to try something different. It does not make any sense at all to follow the same path that has ended so badly before. So, against the advice of most doctors, I keep a sharp eye on every tumor and if it grows consistently I have it radiated while it is small. This method is at best going to extend my chances by a few years, and keep me running as long as possible. What we really need is a medication that targets the tumor's growth and stops them from growing or even forming. Otherwise the tumors will just play a game of Tetris in my head, building up slowly until there is not any room left.

In the meantime... after going over my MRI's with Dr. Duma yesterday we located 2 areas with tumors that are definitely growing and should be addressed now before they are too big to be radiated and would require surgical intervention. I am not having surgery, it is just not happening people.

In case you don't see the 3 headed blob floating in my head I made it easy to find. Several names have been tossed around for this 3 headed atrocity, but Cerebrus sounded too scary. The entire point of naming the little f*ckers (excuse my language Nana) is to make them less threatening. So meet the Power Puff Girls. They are going down. On previous MRIs these were 3 separate tumors, but with time they have grown and joined forces against me. I'll have gamma knife on 2 of them in February, but the area is too large to treat all at once, so I will have to have the 3rd radiated later on. Gamma Knife is amazing, and I am blessed to have it and avoid letting these things continue to grow or having a major brain surgery (although I totally need an excuse for a mohawk.) Gamma Knife hurts, they bolt a frame to your head. I am not looking forward to that, but it is only for a few hours and I will survive.

These are the Thoracic Chickens. When JT was just a baby I had a major spine surgery, Dr. Duma went in and removed every tumor in my entire thoracic spine. He couldn't even count them. Afterward my spine was as clean as I have seen it since I was a teenager. Now these f*ckers (sorry Nana) have the nerve to grow in on my nice clean spine. So every time I see them I think "Ain't no one here but us chickens." I added a chicken for extra emphasis on this point. Very scientifical. Anyway... these 2 tumors are actually working together to create a potentially awful situation. I will have them treated with Cyberknife sometime in February as well. Cyberknife does not hurt, it is the post swelling that worries me, but I will expect the best and prepare for the worst.

I was also momentarily diagnosed with a lung tumor, which on further investigation seems to be my heart, which is for some reason very large. Seriously. I then came home and opened my scans myself, and (mis)diagnosed my bladder as a huge pelvic tumor. At that point I just started laughing.

What else can you do?

2nd NIH Visit

I think I have finally recuperated from our recent cross country trip. We drove up to the Bay Area, left the kids with my grandparents, and then flew to Washington D.C. for my bi annual visit to NIH. I am participating in a study of NF2 by Dr. Asthagiri which involves me flying to NIH every 6 months for the next 5 years. On this visit I had MRIs as well as exams for swallowing, physiatry, and neuro ophthalmology. Everything went smoothly and the ASL interpreters helped tremendously, proving my studying has really paid off. On the final day of appointments Paul and I sat down with Dr. Asthagiri to go over my MRI reports. As usual I was tense and concerned, especially about the tumor in my lower lumbar which I had treated with Cyber Knife last July. It had been a small tumor low in my spine not causing any specific problems. However, I knew it would grow and have to one day be dealt with. If I didn't treat it with Cyber Knife then, I would be facing imminent surgery. I rolled the dice and went in for radio surgery. For several months all seemed fine, but then towards the end of the year I experienced some localized swelling and pain. This is normal and I tried to stay positive. I was unable to walk or bend at the waist, so my local GP worked with Dr. Adler at Stanford to get me on steroids for a week, which brought the swelling down temporarily. I was terrified that the damage was permanent, but over a few months the pain dissipated. So on this visit to NIH I was to be told whether the tumor had stabilized, shrunk, or grown. If it had grown it would need to come out surgically, which is pretty low on my list of things I want to do this summer!

So Dr. Asthagiri came in and told us that the tumor had indeed shrunk... from 1.4 to 1cm!!! That is a big change in less than a year! Paul and I are ecstatic of course. I avoided an entire surgery with an out patient, painless procedure. When I had the Cyber Knife treatment I took a nap, and went for a run right after, and now 10 months later the tumor is smaller! Cyber Knife is not a magical fix all for every person and tumor, otherwise all my NF2 friends would be having it. Everyone and every tumor is different, but for me, things could not have worked out better!

After our NIH visit we flew back to the San Francisco airport and drove home with the kids. We were so happy to be home, and at night I hugged my kids just a little bit tighter. We dodged a bullet, a tiny 1.4 cm bullet!

So Now What??

I woke up this morning in the now familiar way, my legs felt heavy and my back was throbbing like someone was punching me in my spine. I struggled to turn over, and saw Mica's hair peeking out from the comforter. I pulled her close, ignoring the tightness that seized my back as I slid her warm tiny body against mine. Finally I woke her with kisses and pulled myself out of bed, breathing deeply until the pain washed away. I left it behind me and shuffled out to start my day.

Sheila came for me right on time and she drove us quickly to my doctor's office, pausing at all the speed bumps and helping me out of her truck. After a long wait, and once again explaining what was happening to me, Dr. Hanson called Dr. Adler and they spoke. Such a simple event took me days to orchestrate.

So, yes the tumor is swelling, and I was put on oral steroids. I cringed but then remembered to be thankful I was dodging getting the steroid shot in my spine. Then Dr. Hanson said he was putting in an order for the steroid shot through the insurance to be done next week. *joy* I took the information and put it in my pocket to be processed at a later time. A prescription form was scribbled on and I was told to come back next week. I am now taking prednisone (steroid), an anti-inflammatory, darvocet, and prilosec to keep my stomach calm from all of the dope they are pumping into me.

The plan is to shrink the swelling with oral and then injected steroids, and hope the pain all goes away. Hopefully I will then be able to give the tumor time to shrink from the Cyber Knife treatment I already had on it. If the pain and weakness persists, then I will have to have the little *ucker out.

Now I am home attempting to have some semblance of a normal day, whatever that means.

Attempted Follow Up?

My awesome girlfriend Sheila helped me get the kids situated today, then took me to my doctor's office for my emergency follow up appointment. The plan was to go to my GP Dr. Hanson's office at 12:30, and he would call my neurologist Dr. Adler for further instruction. We arrive at his office to be told he was actually at the clinic and had already left for the day....... ????? I told the girl my husband called and scheduled an emergency follow up with him, so why would he be at the clinic and then leave? Sheila drove me to the clinic to see the other doctor in the group, only to find out he is a Physician's Assistant and unable to do anything. Dr. Adler said he needed to speak with my actual doctor, not a PA. I told the PA well then call Dr. Hanson and have him call Dr. Adler. They had us wait, and then insisted I just come back tomorrow. I told them I was switching doctors, that is absolutely ridiculous. I cannot walk, I am in intense pain, I can't take care of my kids, I could have permanent damage if this is not handled in a timely manner. They told me if I switched doctors this entire process would take even longer, and basically I have no choice but to wait another day and go back tomorrow. I finally gave in and picked up the Darvocet from the pharmacy and started taking it. It relieves some of the cramping and makes the pain more bearable. Sheila is a huge help, she is going to take me back yet again tomorrow morning, and hopefully then I will finally get some answers!

ER Trip for Tumor Swelling

I debated whether or not to share this post. I tend to keep my ongoing health issues private with my family and the NF2Crew. I don't want to be the sick mom, the friend with a disease, the Deaf girl in the class. I am more than that. I am a wife and mother, a student, a writer, a runner, a friend and a daughter. I don't wake up everyday and think of myself as disabled. When I share about my journey with NF2 my intent is to inspire donations to CTF for a cure, share experiences with fellow NF2ers so they can get the help they need, and offer a blog where other people can become educated about the personal side of NF2. This blog is not for whining. There is no whining allowed. So, I debated whether or not to share this post...

Back in June of this year I had CyberKnife on a tumor in my lumbar spine at Stanford with Dr. Adler. On my last day of treatment I ran 3 miles, joined my husband back at the hotel, and had a nice glass of wine. As we made the long drive home I told Paul how incredible it is to treat a tumor on my spinal cord without major surgery and recovery. I assumed that was the extent of the experience, and came home to focus on running a marathon. Over the last 2 months I have had some ongoing pain and cramping in my lower back. My MRIs were reviewed, and no change in the tumor was noted. I carried on as usual, until over this last weekend. My lower spine has become so stiff, I was able to touch my toes a month ago, suddenly it was excruciating to bend over to wash my face. Lifting my legs to shave, carrying Mica, sitting up straight... one by one normal things became painful. I contacted my neurologist at Stanford and waited for a reply, which I knew would take time since it was the weekend. Today I woke up in considerable pain and planned to go to my general doctor for xrays to rule out an athletic injury. Then at about 10am I developed a horrible migraine. I was nauseous, dizzy, and my entire lower body felt like it was cramping inward. The pain radiated in shocks throughout my lower waist and upper legs. Friends took my kids, Paul came home and took me to the ER.

I just got home, the doctor in the ER convinced me to take darvocet for the pain, which obviously breaks my no pain medication rule. Pain medication is evil, I believe that pain should be dealt with to as much of an extent as possible. Today, the pain won. X rays ruled out athletic injury, and other testing ruled out kidney problems. Dr. Adler got in touch with us and said it sounds as though the tumor is swelling from the radiation. Sometimes, they swell larger before they shrink. I knew this was a possible side effect, I just didn't know how bad it was going to hurt. The tumor is most likely causing congestion in my spine. Tomorrow I am to see my regular doctor, and Dr. Adler will call and create a plan with him to deal with this. As of now the suggestions include a steroid shot into my spine or surgery to remove the tumor.

I'm home alone now, my skin is pasty and the pain is throbbing quietly, as though patiently waiting to break through the darvocet. My children are with friends, but my intelligent sensitive boy is already asking questions. He even asked his teacher at school. It breaks my heart to think of how I will care for them tomorrow. I don't want to be the mom who parks her kids in front of the TV while I sleep away the pain. So I wont. I still have a choice. I have finals next week, I will finish them. I will play board games in bed with the kids if I cannot walk around again. I will run Surf City in February, even if I have to hobble. I've had my eye on that medal for way to long to let some stupid tumor mess it up. These things may sound trivial, but they are the pieces that make up my life.

*Never Give Up*

Cyberknife Final Treatment and I'm home!

Friday morning's Cyberknife treatment was so incredibly simple I left the office just thinking "that's it?" It was almost too easy. I dozed off as the laser whirred around, targeting the tumor in my t spine we were preventatively treating. After the appointment there was nothing left to do but drive home...

I was so excited to see my babies, and they ran into my arms smelling like sweet goodness and gave me tiny little kisses allover my cheeks. Everyone kept asking me how I feel and I had to laugh because I actually feel like crap! I have the worst sinus infection and it's meant conjunctivitis, a totally stuffed nose, headaches, no energy, and a throat that is bordering on strep throat for the last several days. All I want to do is sleep... but it has absolutely nothing to do with the huge medical procedure I underwent. It's coincidence. As easy as Cyberknife was, as easy as radiating 2 tumors pressing into my spinal cord was, to come home and be knocked down by a sinus infection is just a bit ironic to me. Sometimes I just want to yell out to no one in particular... "Are you freaking kidding me!?"

So the treatment is behind me and I am free to live my life as normally as possible for another 6 months before I need updated MRIs. In that period of time I will runa marathon and go back to school, yet I know all to well how fast the time will go.

Cyberknife Day 3, Treatment Day!

After a long day of wine tasting and general debauchery yesterday, I struggled to get to the hospital bright and early at 7am this morning. I threw on my running gear and showed up at the hospital in my adorable new running shorts and a spiffy ponytail. Then I realized I didn't have to check in until 9am and slept in the waiting room on Paul's shoulder for an hour.

The Cyberknife team had already used my MRIs and CTs to develop a treatment plan yesterday. The plan for today was to radiate the tumor pressing on my lumber spine spanning L3-L4. 10 years ago treating this tumor would have meant a major surgery, at least a week of hospital time, months of physical therapy, steroids and pain medications. Surgery after surgery like that is what really tears apart the bodies of people with NF2. It's not just the tumors, it's being cut open repeatedly to take them out. I feet blessed to be treated by radiation therapy today rather than facing a serious spine surgery in a year.

So today Dr. Adler came and had me lay down in the mold we made of my body on Tuesday which had been positioned on the bed of the Cyberknife. They made sure I was comfortable, even gave me a blanket, and told me to just rest and stay still. The Cyberknife is a huge robotic arm that rotates in increments all around the target area during the prescribed treatment time. By constantly rotating but maintaining a point of contact with the tumor the radiation is concentrated as needed, sparing the healthy surrounding tissue unecessary damage. What is surprising is just how big the head of the laser is, and that thing gets very close to your head and swings around every which way. It was interesting to watch, and after about an hour it suddenly moved back into it's starting position and turned off. Dr. Adler came in and said that's it for today! I felt absolutely no pain or discomfort at all.

I guzzled some water as we drove away from the hospital and had Paul drop me off 3 miles from the hotel. I ran back in 30mn, making good time despite having just had radiation therapy! I actually tripped at one point, but just got back up and dusted myself off, then kept on running...

Cyberknife Day 2

We awoke around 6am, groggy from a long nights sleep, but I was anxious to finish the day's appointments and get rid of this IV! I had slept in an awkward position all night, and the IV had blood in it. Paul assured me this was normal, but of course I needed to whine a bit to get the day started. I tried to dress but with my bionic arm was severely limited and ended up in sweats and flip flops. Try doing a full face of makeup without bending your dominant hand's arm, I am proud to say somehow I did it.

We reached the hospital bright and early and waited in the Radiation Therapy department for the nurse to beckon us. They flushed my IV and slipped in a contrast for the CT. They warned me I would feel warm and as though I was peeing on myself... seriously. I waited for it, but only tasted a slight metallic aftertaste in my throat. The doctors had me lay on a deflated foam bed outside of the CT. They connected a hose to it and it began to inflate and harden around me. Using their hands to push it tight against me and under my lower back, it inflated until it was hard and held me in one position for all further treatments. They made sure I was comfortable, and when the mold was complete they slid my enshrined body into the CT. It didn't last long enough for me to get a catnap before I was brought back out and shooed out to the waiting room.

At this point I was expecting to ditch the IV, but was told they needed another MRI for a closer look at a specific area. We took a tram with another lady also planning to have Cyberknife to the other side of the campus. There I had more contrast injected into my IV, and another MRI. At this point I was done, just tired and ready to go. As soon as the MRI was done the tech ripped off the IV tape and set me free. I almost skipped out of the waiting room, and even stole a copy of W magazine. I'll give it back! Don't judge me.

My Gramps and Diana drove down to visit us and we had a great lunch and nice glass of wine at a local steak joint. No I didn't have steak but I did enjoy the wine. I have tomorrow off while the Cybeknife team creates a treatment plan. Paul and I are going to take a much needed day trip to the Santa Clarita Valley to explore a few wineries. I never knew radiation could be so fun.

Cyberknife Day 1

After a long drive into Palo Alto Sunday we stumbled into our hotel around midnight. The alarm went off a bit too early at 7am the next morning. We headed to Stanford University Neurosciences Center where I met with Dr. Adler who is coordinating my care during this treatment process. As always he and his nurse were incredibly friendly and helpful. He took the time to give me a full neurological exam and noted that I am doing incredibly well.

We headed to see Dr. Gibbs, the Radiation Oncologist, in the cancer center right after I consulted with Dr. Adler. Dr. Gibbs was so informative, and answered all of my questions. She stated that with Cyberknife they are seeing positive results around 85% of the time in NF2 patients. She warned me of possible side effects such as nausea and vomiting, maybe fatigue, but promised they would prescribe something to help. She went over the possible long term effects, such as damage to healthy tissue or the spinal cord, paralysis, prolonged swelling or pain. I signed away my fears and felt comfortable trusting in this team of obviously well trained doctors to treat me.

At this point I was sent to the main hospital to have MRI's taken of my spine. An IV needed to be placed to receive the contrast for both the MRI's and then the CT I would have on Tuesday. I have teeny tiny little veins, Paul and the nurse we're laughing at my pathetic vascular system as I whined that it was not my fault. The first stab was only a prick, but the nurse could not find my vein and had to dig around a bit inside my arm. Tears threatened to fall and I just held it back until finally she looked at me sadly and said she was going to have to try again. I shrieked a bit, but one look from Paul and I controlled my outburst and stayed still for the second try. After another minute of stabbing, she sighed and took that one out as well. At this point another nurse was brought in, he grabbed my arm, jabbed the needle in, and grabbed a vein the first try. I loved him, I wanted to cook dinner for him. The MRI itself was easy as always, and we headed back to the hotel around 4:30 with my IV still in place to avoid another vein hunt the following morning.

We were exhausted from the drive and a day of waiting rooms, so we gorged on Chevy's margaritas and passed out at 6, sleeping all the way through until the next morning!

Take What You Can Get...

This weekend is starting with a bang! My first nephew, Xavier, was born this morning up at Victor Valley Hospital. I was really sad to not be present for the birth as I was with my 2 nieces from Paul's brother Freddie, but Mica is sick which forced me to stay home. We'll visit tomorrow!
Sunday is my best friend Adria's Master's graduation ceremony! She really kicked ass and I am so proud of her. Straight after the party Paul and I are driving to Stanford and staying at the Crowne Plaza for a week of Cyberknife appointments and treatments. Ironically, Paul is being seen as well by a pituitary specialist while we are there. That worked out quite nicely actually. I will be blogging daily from Stanford and chronicling my experience with Cyberknife, and still plan to run a 5K after the first treatment on Thursday. Paul and I are looking forward to a week away, even if it is to have radiation therapy on 3 spine tumors! You take what you can get when you have 2 kids!

A New Goal!

Sometimes you just have to purge, and let go of things holding you back. Whether its a bad habit or a pile of clothes you never wear, letting go frees you to utilize that space more effectively. I wont allow any negativity around me anymore, I cannot afford it. I don't know how long I have to live my life the way it is now, but I intend to enjoy every minute of it.

My trip to Stanford is all set! Is it wrong to be excited to have radiation therapy? I figure by assuming the treatment will be fun I can face the reality with a better outlook. An IV is nothing compared to running 13 miles in Southern California sun! Fatigue? I'm fatigued evertime I run a 9 minute mile! Possible nausea? Maybe I'll finally kick those last 2 pounds! Setting specific goals that stretch over and past those things we may not want to do is the best way to beat through them. So, the day I have Cyberknife treatment, I am going to run a 5K! I'll map a run around the hospital, and wear my CTF Endurance Team singlet with pride!

What goals have you set for yourself? What are you doing today to reach them?
*Never Give Up Hope!*