Chemo Brain

I just did something that I never did before. After being cleared to fly, I made airplane reservations for Christmas to visit my husband's relatives.  I must have clicked the button to search all local airports, because I accidentally made reservations to fly out of San Francisco, not San Jose, like I usually do.

Not realizing this, we went to San Jose airport today to catch our flight.  Of course, we couldn't bring up the flight of the computer and I couldn't figure out why.  So we went to the agent who, of course, told us that our flight was out of San Francisco.

Ack!  Chemo brain!  And radiation brain!

We were two hours ahead of when our flight departed, but the agent said we would never make it.  There were no other flights which we could book - everything was sold out.  There was no way that I was going to screw up Christmas!

So.... we make a split second decision, walked out of the airport and grabbed a taxi up to San Francisco airport.  We asked the taxi driver if he could get us there in an hour.  One hundreds dollars and an hour later, and managing to get past an accident on Highway 101, we managed to get to there there with 50 minutes to get through check in and security. Check in went fine and security was pretty light, despite what the San Jose agent had told us.  We made it with 5 minutes to spare!  That was the closest shave ever!  Thank God it was a domestic flight.

I've never been so glad to get on a plane!

That's probably the dumbest thing I've ever done. Next time I'll ask Duane to review!

Radiation and Chemo Finished

I haven't done much blogging of late.  The chemo was okay, but the radiation kicked my you-know-what!  I have done a lot of sleeping over the course of the last six weeks. 

By week #2 of the radiation/chemo, my speech, which was starting to come back, was already impaired again.  They put me back on steroids to help with that, but I argued for a half dose because I never sleep when I'm on steroids.  I just couldn't go without sleep for five more weeks.

By week #4, my hair was coming out in large clumps on the left side of my head.  Still, I had a comb over so it didn't look too bad. But it was obviously thinning. 


During all of this time, I was going to to speech therapy, motor therapy and occupational therapy, as well as orthopedic therapy for my knee.  I had medical appointments almost every day, except for the weekends. 

Speech therapy was really useful to learn how to talk again, but the improvements were tiny and took a long time. Fortunately, I had my son coaching me on my words.  Best coach I ever had!

Motor therapy was for my right side, which has decreased fine sensation, decreased ability to feel temperature, and a certain amount of numbness, similar to a stroke.  My gait was also uneven, but not so uneven that I had a risk of falling.  That was nice to find out, although the steroids caused havoc with my long muscles.  I couldn't get out of a chair without pushing up on my arms, but I was prohibited from doing squats because of my knee, to strengthen my quads.  A lot of straight leg lifts, as well as side to side leg muscles. My legs are really weak now.

The occupational therapy was for my typing skills.  Because of the slight decrease in strength and the numbness in my right hand, I have having difficulty typing, aside from the problem of spelling. I am no longer a 120 wpm perfect typist. I also have great difficulty opening bottles and jars now.

It also took months of rehab on my knee.  I can almost get it straight, but not quite.  This will take more time.

The best part of being finished with radiation and chemo is that I'm now cleared to fly up to my husband's family and spend Christmas with them!  We leave on Saturday!  Time to get a mani-pedi and a trim.  I won't say a "haircut", but there's not much left to cut.

Mass + Chemo = ???

A friend picked me up this morning for 8:30 am Mass.  I always feel better when I start the day off with Mass.  More recollected and ready to take on the day. But... this was the first day of taking my chemo first in the morning.What would happen?  The last thing I want to do in Mass it make an untoward emission.  So I took an anti-nausea medicine with the chemo and hoped that would do the trick.  (I also sat very close to the bathroom.)  Fortunately, it did! After Mass, I went to Le Boulanger with some friends and had a yogurt fruit parfait - good probiotics for my tummy! Later met a friend and had a good conversation over lunch, a healthy serving of vegetables!

Later in the afternoon, I had another physical therapy appointment.  I seem to be losing some ground on my knee.  My ankle is swelling up now that I'm off the steroids.  Harumph!

Another radiation session tonight.  I seem to spend more time in the waiting room then I do in the treatment room, which I suppose is a good thing.  It was a surprise that Duane met me and the kiddo in the waiting room afterwards, and a good thing because the kiddo had a flag football party.  A good time was had by all, and the kiddo got the Best Defensive Player award.  Woo hoo!  He did catch a few good interceptions! I love watching him play. It's like watching grace in motion! I've never seen such a talented athlete.

First Day of Chemo and Radiation

Would  you like to make "emissions" in this toilet?
Credit: http://drhousecleaning.blogspot.com/2011/11/how-to-clean-toilet.html

Today's schedule for radiation was at 7:00 am.  This was fine because I'm now going to sleep at 10:00 pm, which means I'm waking up at 5:00 am.  It is a good time to think and get stuff done.  Beginning  on November 19th, I get into a regular slot at 7:45 am, but until someone else comes off the calendar I'm in whatever time they can put me - which means very late in the day.  I balked at 7:00 pm, and and at least got them to put me in a little bit earlier in the day.  Amazing that they have such a back up of patients.

My first supplies of chemo arrived around 11:30 am.  Unfortunately, that was too late for me to take it because I was supposed to have lunch with friends.  So I opted to take them two hours after lunch.  Had a nice lunch with friends at Cheesecake Factory, one of my favorite places, and had my Grilled Chicken Tostada Salad.  Yum!  Lots of greens and lean protein, which is good for me.

After getting home, I took my daily dose.  I decided not to take a anti-nausea medicine because I wasn't sure I needed one.  As it turns out, I didn't have any nausea all day... until midnight when I woke up wondering if what I was feeling was nausea.  So I got up to go the bathroom and promptly threw up.  I guess that answered my question.  After taking an anti-nausea medication, I slept through the rest of the night.  Ahh!

Dry Run

Today I met my chemo doctor - on the day that my chemo is supposed to start.  Although there are a long list of side effects, I found out that nausea, rash and diarrhea are the main ones, with a slight drop in white blood cells.  I've have a blood test every week to check on my immune system.  Since they don't have any samples, I'll have to wait for them to arrive tomorrow.  Apparently, I'm not allowed to order them chemo drugs from my pharmacy. The insurance company requires that they be distributed by mail order. This may have something to with a shortage of chemo drugs in this country, and as well as them not being in big demand. 

The dry run for radiation also happened today.  They put my mask on, and situated me on the table and measured distances so that they would be putting the radiation in the right place.  I happened to wear an longer cotton shirt from India, and found that I don't need to wear a gown if I wear that.  Need more Indian shirts!  I need an excuse to go shopping!

I had an another PT appointment for my knee.  My knee is more swollen today because she worked on the back where the hamstring attaches.  More stretching needed!

How God Speaks to Us Through Our Sin

Giotto di Bondone, The Crucifixion, The Capella degli Scrovegni, 1305 AD

I'm a Roman Catholic.  I haven't always practiced my faith. There were twenty years during which I walked away from the Church.  I still believed in God, but I didn't believe that I needed the Church.  For some reason, it did not occur to me that Jesus had a good reason for giving the Church to us.  At that time, I believed in my own goodness and abilities.  This is when God speaks to us through the consequences of our sins.  I had some whoppers.  I lived with a man without being married who suffered from chronic depression and who eventually killed himself (after I left).  Obviously, my parents were not happy about me, and our relationship suffered because of what I was doing.  I believe that both of my parents prayed continually for me.  And after that relationship ended, I was briefly engaged to a man who I discovered was a convicted child molester.  Fortunately, I found out and broke off the engagement.  But this hit me like a ton of bricks.  Why was I making such poor choices in men?  When I thought about my parents, they had been happily married for over 40 years at that time.  Perhaps, they deserved a second look, because they were modeling a healthy marriage.  For some reason, I had this stupid idea that I wasn't going to be like my parents.  Well, why not?

At the same time, I was practicing family law.  I had never seen dysfunctional relationships in a marriage before.  While no marriage is perfect, our parents and our home was pretty happy.  I got an eyeful during my years practicing family law.  I quickly understood from my law practice all the different ways that marriages fail. 

1. Being lazy in a marriage,  and not communicating with your spouse.  Marriage requires work, and two people can grow apart if they don't work at staying together.
2. Infidelity, to which I would add the epidemic of pornography.  61% of all divorces in California are impacted by pornography.  That's a huge number.  At the time I was practicing, the internet and pornography were not as common as they are now.
3. Alcohol/Drug/Gambling Addictions.
4. One spouse is a saver and the other is a spender.  Many people just don't know how to manage the family finances, make a household budget, and don't know how to resolve financial problems.
5. Domestic Violence.

My years practicing family law were some of the best life lessons that I ever learned, and prepared me for what NOT to do in a marriage, in the same way that my parents positively modeled a good marriage to all of us children.  So, I made some changes in my life.  I got healthy and dropped about 40 lbs.  I also made a list of the kind of values that I wanted to see in a potential husband. 

1. Emotionally stable.
2. Financially stable.
3. Someone who had a good relationship with his mother, and who could remain a friend with a previous girlfriend.  I believe that how a man treats his mother is often how we will treat his wife.
4. Someone who had lived in the same place for many years.

I still wasn't practicing my faith, so I left that dimension off of my list.  If I had to do over again, I would have added it at the top of my list as something essential.

It was at this moment, that my future husband walked in my life.  I found him online, we corresponded for a bit, had a couple of telephone conversation (a bit one sided because my husband is Norwegian and not naturally talkative), and then we went on our first date to the Saddlerack, a fun country western bar with live music and dance lessons.  He was a trooper, and still is an awesome dancer!

After four months we were engaged, and were married about a year after we met in September 5th.  Importantly, I didn't make the same mistakes that I had made previously.   During our engagement, he wanted me to take one of theses human potential movement courses called The Landmark Forum.  Three really great things came out of that:

1. The emphasis on living your life with integrity.  (A concept related to virtue!)
2. I began to repair the damage I had done to the relationship with my parents, first by apologizing to both of them.  It took time, but it became much improved.
3. I was introduced to idea of putting structures in place which forward your goals.  This is when the idea of the Church that Jesus gave to us actually began to make sense, as a structure intend to support our faith.  I had done quite poorly without the structure of the Church in my life.  I realized I was quite fallible and had made many mistakes.  Pride does go before a fall!

Getting Ready for Radiation

Radiation Mask

This morning I had my right knee check up.  All is going well and restarting the PT is helping enormously, especially with my leg extension.  Another check up in ten months.

Today's big appointment, however, was my CT scan and the making of a mask for my radiation appointments.  The paperwork took about 45 minutes.  The mask keeps my head immobilized so that the radiation can be aimed appropriately.  They start with a flat nylon mesh, which they then put in hot water to soften it up, and then mold to your face.  This takes about ten minutes.  It's not uncomfortable, although it's too difficult to keep my eyes open so I just keep them shut.  I'm told I get to keep the mask at the end of the six weeks. It looks like a fencing mask.

Thankfully, I didn't have to have contrast for the CT scan, which in this case would be radioopaque iodine, to which I'm highly allergic.  I would have had to take three days of pills to suppress my immune response just for the contrast.  Fortunately I got to skip this.  The CT scan itself only took about ten minutes.

A Life Changed Overnight

Glioblastoma, Stage 4, in left parietal lobe

If you want to God laugh, tell Him your plans.

On 8/19, I had a right total knee replacement at Stanford. (Because I couldn't walk last year, my weight went up about 45 lbs.)  My knee is now fine, and I have no pain, although I have not had all the PT that I was supposed to have because of what happened next.

Three days before my surgery, I started tripping on my words.  It was just a few words, but I didn't put two and two together before my surgery.  I'm an attorney and teacher.  I make my livelihood teaching and talking. I don't trip on my words normally.  When I woke from the anesthesia, my speech was much worse, but I thought that first week that it was because of all the pain medications I was on, like oxycontin.

By the middle of next week, I was off all pain medicine but my speech was not improving.  I had also spelling problems too!  I also noticed problems with my right hand in sensing temperature and fine sensation.  I couldn't tell without looking and by only touch whether my husband had a shirt on.  I became very alarmed and I thought that I had a stroke during the surgery.  My mother who stayed with me for three days confirmed my feelings. 

I have had epilepsy my whole life so I called my neurologist in a panic.  He never hears from me much anymore.  I usually send him an email to let him know that I'm ok every two years.  So after he heard me on the phone, he knew something was up.  He sent me the number to schedule an MRI.  I got the first available on 9/20, and two hours after the MRI we were in his office looking at the tumor.  By the end of that weekend, my neurologist had made a referral with my neurosurgeon, Dr. Mitchel Berger.  He happened to be in New York that week, but we met with his fellow, who explained about the tumor, which was in the left parietal lobe which controls speech and motor functions. So at least we had information and not just scary pictures.

By a few more days, I had emergency surgery scheduled for 10/2.  I had to have a battery of blood work and testing prior to the surgery. MRIs, brain mapping, MRI spectroscopy, and neurospeech to set a baseline.  They used a marker that makes the tumor glow flourescent pink so just not the mass would be removed, but all of the bad cells that can look like healthy cells.  They got as much of it as they could.  It was also good news that the tumor was caught so early. In this place, it often wraps around an important sensory bundle. It did not have time to do that, which means that they did haven't destroy that part of my brain!  It was an awake (mostly) surgery and I remember all of it.  I'm  told that I got an A+ in brain surgery because I was the calmest patient they have ever had. LOL!  The surgery was on the feast of the Guardian Angels!  How cool is that!?  I've had a mammoth Guardian Angel, and it was like a presence of wings folded around all of us.  Surgery took 5.5 hours.

I was out of the hospital by the following Saturday.  My speech is already coming back.  It will take about 1-2 months to improve. My working memory took a hit, but this is also supposed to improve. However, I'm now a really poor speller.  LOL!  Hooray for spell check!

I'm now healing, and very weak because of two surgeries in two months.  But I'm getting more energy back every day. Yesterday I got back on track with PT for my knee, which is now pain free, although the muscles are a bit weak because I’ve been in bed so much lately.  I do feel so much better now than I did.

Later today, I will get my biopsy results and oncologist appointment.  This tumor is a glioblastoma, high grade, aggressive, and it is the worst kind to have.  I will need chemo, radiation and an MRI every 2 months.  I will have 6 weeks to heal before this starts.  I am under no illusion about what the news will be today.  The worst case prognosis is 1 to 2 years.  No one survives this.  However, I already know that I won’t have that worst case.  My tumor was caught early and completely removed.  I’m young, and the type of surgery I had reduces recurrences quite dramatically.  If you are interested about my pioneering neurosurgeon, Dr. Mitchel Berger, watch this link:

http://abclocal.go.com/kgo/story?section=news%2Fhealth&id=7708538

So… I’m asking for your prayers today for my husband and my mother, as we learn more about this disease.  I believe that it will  be harder on them, than on me. I am also asking for your prayers for my father, who will be told later.

After all, we are not intended to live forever.  We were always intended to go back to God. And after all, God IS in the driver seat.  I have so many questions to ask!

Update:  As expected, we met with the oncologist and I was told, along with my husband and mother, that my prognosis would likely be about two to three years, at the most five years.  The tumor was definitely a stage 4 glioblastoma.