Monday, October 10, 2011

My Fight – The Truth, as I Remember it and as I Live it

I have been asked many times what exactly happened – how I knew I had a brain tumor. Below I have tried to retell my story, as best as I can remember it. There are many moments that are a blur, some I just don’t remember at all, and some that just happen to come back to me at odd moments. There are also some I will never forget. So, here it is… the truth as I remember it and as I live it, the workout of my life, my fight.

In March, I did the first CrossFit Open workout. I was so excited to participate in the Open, especially since there was now a Masters category, and I qualified. I would be 47 at the time of the CrossFit Games.

The first WOD was:

10 min AMRAP of:
30 Double-unders
15 Power snatch

I thought I did okay on it, but felt horrible afterwards. I felt like I had just completed Fran, twice in a row, maybe three times. At that time, according to the rankings on the CrossFit Open site, I was 29th in the world in my age group.

Several days after that, I was headed to Seattle for a visit with my family. I spent a couple of the days in Seattle on my parents couch, with a horrible headache. It went away with Advil and Tylenol, taken at the same time. I also experienced a strange vision occurrence. It was as if ripples on the water made a ring in my line of vision, only on the right side. If I held my hand up near the side of my face, shading my eye, it went away. It also didn’t last long, only a few minutes. But it came back a couple of times while there.

When I got home the headaches continued. They were still treatable with Advil and Tylenol, sometimes not even concurrently, so I didn’t think much of them. And I also had occasional vision issues, but not frequently.

I had decided to try the workout again. I remember how it made me feel the first time, but wanted to give it another go. I had thought through a strategy, and felt confident that I could do better. However, when I did it, I struggled, and barely achieved the exact same results as I did the first time.

I also started to notice some other performance issues. We did the Bear Complex one day, and I struggled on a weight that was lighter than my previous Bear Complex. Something was not right, but I did not recognize it. Things always feel heavy, but things really felt heavier than they should have. My coaches noticed the difference.

Finally, one Saturday morning I just had a hard time getting out of bed. I had a horrible headache, and had just taken Advil and Tylenol, and gone back to bed. I was dozing in and out of sleep. I was just exhausted and wanted to stay in bed. Jen was on her way home and kept trying to call me, but I did not answer. I didn’t hear the phone, although it was right next to me. She called my cell phone, and my work phone, and I didn’t hear either.

When she got home she told me she had been calling and was concerned I didn’t answer. I told her how I felt. She recognized this as completely abnormal for me. I am normally awake early in the morning. Staying in bed was not normal for me. Combined with the headaches and performance issues, something was not right. She said she was going to take me to the emergency room and I did not argue. We went to St. Joseph’s hospital, because the Barrow Neurological Institute is connected to it, and what I was experiencing was neurological. This was Saturday, April 2, 2011.

I was taken into the ER fairly quickly. They brought me back to a curtained-off room and asked me a lot of questions about my symptoms and the length of time I had been experiencing them. They then told me that they were going to do a CT scan of my head. I have had these before, so I had no issue with this.

After the CT scan, I waited in my curtained-off room for the results, hoping to go home soon, as I had been there for some time. The PA came in and said something I will always remember. The conversation went like this:

PA: “Well, we are going to admit you.”
Me: “Admit me? Why?”
PA: “Well, there is something on your scan.”
Me: “What do you mean, ‘Something on my scan?’?”
PA: “There is a mass in your head. You are going to have surgery”
Me: “What do you mean, ‘a mass’”?
PA: “A tumor. You will have to have brain surgery, probably tomorrow”

I remember feeling terrified. So terrified that I could not even call my parents to tell them. I asked Jen to call them, which she did. Every thought you can imagine was going through my head. Every thought. I could not believe this was happening. And I wanted to know why, but I knew I would never know. All I knew was that I was terrified. More terrified than I had ever been.

In the Hospital
I was admitted to the intensive care unit (ICU) in the hospital, where I was hooked up to lots of machines and many more tests were run. I had an MRI and another CT scan done. Because of my level of fitness, I kept setting off the alarms on the machines I was hooked up to. My resting heart rate was alarming, as was my respiratory rate. They finally adjusted the machines so that they would not go off when I hit “normal” low levels. They said that I was an athlete and the machines needed to be adjusted accordingly.

I had no idea what was happening. I had been accustomed to having a good amount of control of my environment, but this was way beyond my control. I had nothing, and I had to just trust. Still terrified…

After all the tests, I started getting visited by more doctors than I could remember. All I know is that they all had either “neuro” or “oncol” as a part of their titles. It was determined that I would not have surgery on Sunday, but possibly Monday or Tuesday. Monday, I was told, was the day that the “Tumor Board” met, and they may want to determine the best course of surgery and treatment for me. The board consisted of the neuro-surgeons, radiologists, and neuro-oncologists, and probably others. But these are the doctors I was told about. Again, the key words, “neuro” and “oncol”, this time, along with the word surgeon. It was all so surreal.

On Monday afternoon I was told that my surgery was going to take place on Tuesday, at a soon to be determined time. I was to have more tests, and was started on anti-convulsants to prepare me for surgery.

My parents arrived sometime, I don’t remember exactly when. I just know that they were there. And someone came in and started talking to me about participating in a clinical trial. This particular trial was for a drug orally administered prior to surgery that fluoresces cancerous cells under a blue light during surgery, making them easier to identify. I was told it was standard surgical treatment in Europe, but not yet approved in the United States. I thought that even if I didn’t get the benefits of the drug, if participating in the trial could potentially help others, then I wanted to participate.

On Monday I also met with my surgeon. He told me what was going to happen. They would shave a strip of hair right above my right ear, and open up my skull to remove the tumor. Once removed, the area would be closed with a titanium plate, and my skin glued back together. I would have no stitches, and any scarring would be hidden by my hair. After surgery I would be back in ICU, until they thought I could be moved to the regular floor.

Sometime late in the day on Tuesday I was prepped for surgery and taken down. I was given the trial drug, or placebo, and taken in to the room. I remember the taste of the drug – sour and citrus, like the lime juice you can buy in the store that comes in the plastic limes, or Rose’s lime juice. Once in the surgical room, I remember them putting the mask on me and telling me that it was oxygen. I remember trying to tell them that I know it is not just oxygen, and that I was going to be out very soon. And that is all I remember.

The next thing I remember is going back to my room in ICU. I have no recollection of even being in the recovery room after surgery. I was then in my room, and the doctors started to arrive. I remember being told I had surgery and they removed the tumor and tissue was sent for testing to determine what kind of tumor it was.

For some reason, my ankles were really hurting me. It was the only thing that hurt at that time. I was on so much pain medication, that the doctors and nurses were surprised that I was in such pain. They didn’t know why my ankles hurt so much. In hindsight, I wonder if I was strapped on to the table and rotated to the side so that the doctor could have easier access to the right side of my head. Perhaps, if so, the straps hurt my ankles. To this day, I have reduced feeling in my toes, ankles, and feet, in general.

The neurological tests began right after surgery. I was put through them so often over the next several days that I remember them:

  1. “Follow my light with your eyes”
  2. “Squeeze my fingers”
  3. “Smile real big”
  4. “Stick your tongue out”
  5. “Close your eyes, hold your arms out, palms up, like you are holding a tray, and hold it”
  6. “Push me away”
  7. “Pull me towards you”
  8. “Close your eyes. Do you feel this?” (following some sort of scraping or touching of my skin)
  9. “Am I raising your finger up or down? Up or down? Up or down?”
  10. And the more complex ones:
    • “What day is it”
    • “Who is President”
    • “Who was President before him”
    • “Spell the word ‘world’ backwards”

I don’t recall how long I was in ICU, or when specifically I was moved to the floor. My time in ICU after surgery is very fuzzy. I remember the doctors coming and going, and visitors doing the same.

I vaguely remember my surgeon coming in to tell me how things went, but I don’t remember what he said. Later, I was told he said that my tumor was fully encapsulated, meaning it has not grown “tentacles”, which make it difficult to remove, especially in the brain. It also had bled inside of it. This is all rare for my type of tumor. He said the surgery went well.

There was also some discussion surrounding whether or not the workout made the tumor bleed, which may have triggered the actual discovery of it.

The one thing I do remember is the Neuro Oncologist coming in to tell me the results of the tests done on my tumor. This may have happened on the floor rather than in ICU, as it happened a day or two after my surgery. It really doesn’t matter where it happened, only what he said. He said that it was a glioblastoma multiforme (GBM), very aggressive brain cancer. I prayed for the word “benign”, but received “malignant”, and statistics were not good. I remember telling him that I was not a statistic. He said that once I recovered from surgery, I would begin a regimen of radiation and chemo-therapy. His bedside manner was less than desirable, and I felt very scared, unsure, angry and confused.

The routine at the hospital was complex and very different from what I was accustomed to; nurses coming and going and doctors coming and going, all different kinds of medicines being administered via IV or orally, and lots of machines.., bed baths, assistance getting up, eating hospital food. When I was moved from ICU to a regular room, much of this routine continued. However, I was no longer hooked up to so many machines. The nurses checked my vitals at shift changes instead. Also, I started doing more, with assistance. I had to start going for short walks around the floor, and I started using the restroom on my own. I think I remember a seated shower at some point as well, with assistance.

Visitors started arriving right after surgery. My uncle on my dad’s side was in town for a conference, and he was able to come visit me. And then my friends started coming. Some I hadn’t seen in a while, and all of them I was so happy to see. They gave me words of encouragement, hugs, hope, and love. My parents were always there, and my brother and his wife flew in as well. Jen stayed with me all the time. She helped me so much during this time, watching out for me, making me feel secure, and just being with me.

Visitors were comforting. It was so good to see everyone. It made me feel connected to the outside world. At the same time, I felt bad that everyone had to take care of me, that I could not take care of myself.

Heading Home
On April 8, I was told I would be released. 3 days after brain surgery. How could this be possible? I thought that there must be some kind of mistake. How could it be that a person could have brain surgery, and go home 3 days later? I was terrified to go home. So much went through my head. What if something happened while I was at home? What would we/I do? It is a long drive back to the hospital. How would I function? How would I make food? How would I remember to take all of my meds?

I still felt out of it, impaired. I didn’t feel capable of doing anything for myself. But yet I sounded and appeared normal to everyone. My feelings were a side effect of the surgery and medications. It was decided that I would not be alone. One of my parents would always be with me.

And I went home. And nothing happened. Everyone helped me, and nothing happened. I was still terrified, every day. So much had happened in the past week; ER, admittance straight to ICU, brain surgery, diagnosis, and then home.

Next Steps – My New Life
For the next couple of weeks, I had follow up appointments with all of the doctors I met in the hospital.

I met with my surgeon two weeks after surgery. He cleared me for light exercise, and said I could do anything I felt comfortable doing. Essentially, I needed to listen to my body. I asked him about the clinical trial I was on for surgery. I did not want him to tell me if I received the drug, because I really did not want to know if I did not receive the drug. But I wanted to ensure that the research director responsible for this trial knew she could contact me if she needed to. My surgeon looked me square in the eyes and told me something that I will never forget. He said, and nearly verbatim, “Well, first, you received the drug, and that made our jobs easier. You are ahead of the curve.” I high-fived him, and thanked him.

I met with the radiologist, who explained what would happen over the next 6-8 weeks. Once fitted with a radiation mask, I would receive 6 weeks of radiation treatments, every weekday, for a total of 30 treatments.

I met with the neuro-oncologist who explained what would happen over the next year. During radiation, I would take oral chemotherapy drugs every day, for 6 weeks, even on days I did not receive radiation. After radiation concluded, I would take a 23 day break, and then start a regimen of 5 days of chemo, 23 days no chemo. From a CrossFit perspective, I look at this as “5 days on, 23 days rest”. I did not know what I do know now, that my chemo dose would increase each cycle until I hit the prescribed dose.

I also met with a research director, who talked with me about a clinical trial I was eligible for. This trial was for a drug not yet approved for first time occurrences of brain tumors, but for reoccurrences. Through the trial, they were looking to get the drug approved for first time occurrences. The drug was approved for first time occurrences of other cancers, just not brain cancer. This trial would require me to receive IV infusions every two weeks, starting concurrently with my radiation and chemo treatments, and continuing for about 14 months total. The trial is a double blind trial, so no one would know if I receive the drug or the placebo. The drug, if I were to receive it, affects the cancer at the blood level, cutting off the blood supply to cancerous cells and causing them to die. I decided to participate in the trial. Again, I thought that even if I didn’t get the benefits of the drug, if participating in the trial could potentially help others, then I wanted to participate. So I signed on the dotted line, in multiple places.

Appointments, Appointments, and More Appointments
I had a calendar, but I was quickly learning that it was not going to be large enough to keep track of all my appointments. Doctors, lab work, people coming and going, and just life appointments.

On May 2 I was scheduled to have a CT scan and what was called a “dry run” in radiation. I know now I was told what would happen during this dry run, but at the time, I didn’t know. It turns out that this was when I was to be fitted for my radiation mask.

The radiation mask is a custom-fitted, plastic face mask that holds your head firmly to the table during radiation treatments. It is important that it fits snugly, so you can’t move your head at all. It starts out as a sheet of firm, flat, plastic mesh. The technician soaks the mesh in warm water so it is pliable, then presses it down on your face and locks it down, as if it was an actual treatment. In this way, the plastic then molds to fit the exact dimensions of your face and head.

The mask takes about 30 minutes to dry, and you are locked down the entire time. Once it is dry, the technician then needs to take measurements and align the mask up to a laser. All of this is done while the mask is still locked down. The measurements are critical to ensure that the treatments are in the correct place. X-rays are also taken to ensure this. The mask is marked so that once treatments are started; the measurements will always be the same. This was a frightening experience.

It was at this time I learned that I would have radiation every weekday at 2:45. I was to take my chemo drugs 1 hour before, at 1:45, and anti-nausea medication at 12:45, 7 days a week. Treatments were to start on May 3 or 4.My first infusion was to be on May 26.

I find it interesting that getting chemo and radiation is called a treatment. There is nothing “treat” about it. But it is treating the illness. So from that perspective it makes sense.

Every day I would take my anti-nausea and chemo drugs at 12:45 and 1:45 respectively. Monday through Friday I would get radiation at 2:45. It was only part of the routine. I would leave the house at 2pm to get to St. Joes. I would eat at 12:45, and take my supplements. Everything was documented, written down, so that I would remember that I did it, and am able to look back and see what I did.

Because radiation was at the same time every day, I’d see the same people. On the way to radiation, there was always a girl with cherry-colored hair at the bus stop. In the radiation building there was Gary, whose ride was always late. There was the girl with the tattoos, Doug with the iPod, and a couple others.

I also got to know each of the technicians by name. They were wonderful, and made this difficult experience more tolerable. They also got to know me. I shared with them my CrossFit experience. When I was completely done with radiation, I sent them a thank you card and gift basket. I hope to someday see them again, under different circumstances. They were truly wonderful people.

Of all my treatments, the radiation was the most difficult. Radiation is designed to damage cellular DNA. Cancerous cells with damaged DNA cannot recover or replicate. They die. Normal cells with damaged DNA recover and replicate.

The treatments didn’t take too long to do, as I was only in the treatment room for about 10 minutes. But the aftereffects were challenging. My treatment was at 2:45. By 3:15 I would start getting a headache and start feeling tired. The headache was attributed to swelling from the treatment. My radio-oncologist put me on steroids, which I remained on for quite some time. The steroids helped with the headaches and nausea from the radiation. I had to be tapered off the steroids.

People ask me what radiation was like. It was mentally challenging, but CrossFit prepared me well. I would lie on a table and get strapped down. My radiation mask would be locked into place so that I could not move my head. I had to be still. I was lined up using lasers, so that I was in the exact same place every time I went in. I received a total of 9 treatments per radiation session. There would be 7, and then the technicians would come in and turn the table so my position would change, and I would receive the remaining 2.

While I lay there, locked in, I prayed. I prayed for myself, and I prayed for others. I think it is important to pray for others as well. I said multiple prayers, and I had beads to keep track of each one. I also talked to God about the fight against asteroids . I liken this ongoing fight to the game of Asteroids. I am fighting. God is my copilot. My family joined in as the tail gunner, navigator, bombardier, and wing girl/man. And I have a ground crew of all my CrossFit friends, helping us on our way.

On my first radiation treatment, part of a Bible verse kept going through my head, “Be still”. I could not remember the entire verse, just “be still”. And it helped me be still on the table, not cough or swallow too hard so that my head would accidentally move. After the first treatment I was telling a good friend about this, and he sent me the verse. It was Exodus 14:14, “The LORD will fight for you; you need only to be still." This also became a prayer for my treatments.

While all this was going on, I found that I was struggling trying to remember things. Simple routine things, like if I showered, took my medication or supplements, what I ate the day before. I found that I needed to start to write things down, journal all my food and meds, so that I would know if I was eating enough and properly, and would know how my day really was. I didn’t trust myself. Everything got written down. Everything. This has since changed, and I no longer log everything. But I sometimes still don’t trust myself.

The radiation also caused my hair to start falling out. It fell out in the areas in which I received my treatments. This really did not bother me – I expected it, and it is only hair. I also got some radiation burns on my right side, where the majority of the treatments were applied. My skin dried and pealed off, much like sunburn.

One radiation treatment was applied into my right ear. This caused my ear to get the dry, flakey and pealing skin that my scalp had. However, the flakes logged in my ear. After my treatments ended, I went to an ear nose and throat specialist. I had my ear vacuumed out a couple of times, and have since been on drops to try to help my ear recover. I also have a little bit of hearing loss in that ear. My ear still is not feeling as it should, so I continue to see the ear nose and throat specialist to try to kick-start it back to health.

My last day of radiation was June 15. At this time, I started my 23 day break from chemotherapy. Once the break ended, my regimen changed to 5 days of chemo followed by 23 days off. The dose of chemo also changed, and continued to change until I got to my maintenance dose of 350mg. I always start on a Tuesday, and take my last dose on a Saturday, that way when I am feeling the worse, it doesn’t interfere with work.

This regimen, along with my bi-weekly infusions, will continue until sometime in July, 2012. Additionally, I will have MRIs every 2 months, then going to 6 months, then yearly, probably for the rest of my life.

The chemo drug is very tolerable. I take the anti-nausea medicine one hour prior, and then take the chemo. This is timed so that I take the chemo just before I go to bed at night, that way I sleep through some potential side effects. On a couple of occasions I have not calculated the timing properly, and have had to force myself to stay awake so that I could take my chemo. Now I plan a little better.

By the end of the 5th day of chemo, I feel very fatigued and pretty nauseous. I have had to start taking anti-nausea medicine during the day to help get me through. The Sunday after my last dose tends to be a “lost day”, as I am still nauseous and very fatigued. By Monday I am feeling better, but not “normal”, sometimes needing additional anti-nausea medicine. I guess, really, nothing is normal as I knew it. It is a different normal.

So today, it is just the chemo regimen of 5 days on, 23 days rest, Infusions every two weeks, lab work every week, and an MRI every 2 months. I also continue to have doctors’ appointments, and receive the barrage of neurological tests, similar to those I received in the hospital. In July, 2012, that changes.

Additional and Unexpected
Right after surgery there was much I could not do. Although I was cleared to do some things, I didn’t drive for a while, didn’t cook much, and generally didn’t do much without someone else around. The same was true after radiation. I just didn’t feel comfortable doing normal things. I was afraid to drive. The movement was overwhelming and made me dizzy. It was just too much to mentally process. I wasn't quite expecting this.

The issue with my ear was somewhat unexpected. I knew that I may have some issue, but I was not sure what it would be. I will continue to have follow up appointments with the specialist to try to get it resolved.

Also, I started counseling. I think this was maybe the best thing I could have done, and I think it is really helping. I had found that my confidence had deteriorated. I started having anxiety attacks over little things. There are other things as well, that the counseling has helped with.

And Then Everything Fell Apart
Due to circumstances beyond my control, I had to move out of the house I was living in. It was an unplanned move due to an unpleasant situation. At around 6pm my friends came over and boxed up my belongings, loaded a truck, and drove me to my new home. It was the fastest and least planned move I had ever made. But, for my health, it was the most important. I am forever grateful to my friends who helped me. I definitely could not have done the move without them.

Living in a new place, and new neighborhood, was so hard. I didn’t know my way around. I was just starting to get comfortable driving again, and now I had to start over, in an unfamiliar area. I was terrified. I was told to have someone with me 24/7, to ensure I was ok. I had to ask for help, and this was so difficult. I did, and my friends came. They stayed with me and made sure I was well. They helped me go to the grocery store, doctor’s appointments, and make dinner. I am forever blessed by their love and generosity.

Obviously, I was unable to work while in the hospital. But when I got home, I began work again. I work from home so that gave me flexibility to go to doctors' appointments, radiation, and rest when needed. I didn’t skip a beat at work, and so far, have achieved nearly all of my goals for the fiscal year. Now, I sometimes work too much, and don’t take enough breaks. I realize this later in the day, when I start to get fatigued. I look back on my day and realize that I have been working since 5 or 6am, ate lunch at my desk, and didn’t stop working until after 3pm. I try to be more cognizant of how much I am working, and also be more efficient at what I am doing.

I am thankful to have work, as it gives me something to focus on. I am so blessed to have a job that provides me with the flexibility to go to doctors' appointments and other appointments.

Next on the Horizon
My treatments will continue through the July, 2012 timeframe, and MRIs continue long after that. At a yet to be determined time, I hope to move to the Seattle area to be closer to my family. This means changes in doctors for my future care, changes in insurance, and changes in my routine. This is all very stressful and scary to me. Right now, although CrossFit prepares us for the unknown and the unknowable, I struggle with this potential change. With my friends, faith and family, I pray to fight through.

How Does CrossFit Fit Into All of This?
When I was disgnosed, I was in the best physical and mental shape of my life. I owe this to CrossFit. I wonder if I hadn't been in such good condition, if my outcome would have been different. It will never be known.

After cleared from surgery, I was able to begin working out again, although not lifting anything over 30% of my max. This was fine with me, because I was afraid to lift anything at all. I was also told to start slowly and listen to my body.
I lost quite a bit of muscle while in the hospital and going through treatments. My first goal is to try to regain some of what was lost. I had been initially just focussing on strength movements, but have recently started to do regular metcon workouts in addition to strength. I hope to continue this.

Besides the conditioning, CrossFit has given me community. It has become a family. The people who do CrossFit have many things and experiences in common. We are bound together by common experiences, by our WODs. And this community reached out to me, and continues to hold me in their hearts. For this I am very grateful and blessed. My WODs may be different now, but we all have different WODs... or WUUs.

A Final Word
I have said this before, and I would like to say it again. As difficult as the past 6 months have been, I have had times where I have seen and felt the love of friends, acquaintances, and complete strangers. It is an amazing feeling. People are truly remarkable. They really are.

I have also had some God moments, some miraculous moments. I know that God is with me. If you would like details, let me know. I have started writing them down, so I don’t forget. I call it My Little Book of Miracles. I pray one day it is not so little.


Caroline said...

I LOVE that you told your doctor that you "are not a statistic"! Good girl! I look forward to you moving closer (whenever that may be) and when you do, I'd love to see your "little" book of miracles... I have a feeling it will not be little at all! Stay strong and stay "still" - you will be taken care of. Much love your way!

Garagegy702 said...

I knew the day we met at Crossfit Flagstaff that I was privileged that our paths crossed. Your courage in not only your fight with Brain cancer but in telling your story with such honesty is incredibly inspirational. Crossfit may prepare us for the unknown and unknowable but you are living proof that every second counts. Thanks for sharing some of those seconds with me.Stay strong and continue to lean on those of us who love you as we will surely be standing right beside you to be leaned upon if needed.

s said...

Wow, thanks for sharing your journey, positive outlook and perspective. May your healing process become a complete recovery.