Thursday, December 7, 2017

Another Birthday...who knew it could happen?

     Today I am celebrating my 59th birthday!  I woke up with a really bad cold this morning, feeling miserable with typical bad cold symptoms.  When the morning mind fog cleared and I realized that it was my birthday, I was energized to make the best of my day because I never thought I'd make it to 59 years.  One week shy of five years ago today, December 14, 2012, was the day I learned that I have stage 4 cancer.  At that time, the chance that a stage 4 lung cancer patient would ever become a 5-year Survivor was a measly 2%.  TWO PERCENT!  I found a more recent stat from 2016 indicating that the 5-year survival rate is now up to 14%.  With new treatments and technologies, that's a whole lot better, but an 86% death rate is still pretty crappy.  

     Along with my new iPad, (thank you, Wynn), my other big birthday gift was my most recent brain MRI result.  The small tumor that was CyberKnifed back in March continues to look like it's dying away and there were no new tumors found.  For now, that's a huge gift...given that I expect more in my future.

     So today, I'm filled with gratitude that I'm beating the odds.  I'm not sure why my luck's been holding out, but it is and I'm really hoping for more time and many more birthdays.  

     To my beloved family and friends, your ongoing love and support are making my journey do-able.  From the bottom of my humble heart, THANK YOU!

Friday, November 17, 2017

Hot Pilates and Stage 4 Cancer

     I've got a lot going on.  Couple stage 4 cancer with routine, run-of-the-mill, maladies and I end up seeing a bunch of doctors.  Just in 2017, I've meet with seven new doctors and will probably meet two more by the end of the year.  Upon meeting me for the first time, the last three doctors said some version of  "You look better in person than you do on paper."  Each time, I took it as a complement...but it also reminded me of how sick I am.

      Last week, I met a gastroenterologist.  As he read over my records, he said the line..."You look better in person than on paper."  So I told him that my personal and, until now, private goal is to be the "healthiest looking, sickest person I know."  I told him that I'm trying to eat right, sleep right, and exercise daily.

     Decades ago, I became a jogger as an efficient way to keep my weight in check, manage my cholesterol, and stay aerobic.  I've never been an athlete, but I've always enjoyed being active, so my family and I also hiked, cycled, kayaked and skied, both downhill and cross country. I can no longer do many of the activities I used to do.  My body hurts when I try.  So, I've had to find new activities...ones that would help me manage my chronic aches and pains.  

     Several months into my cancer diagnosis my dear friend, Brigid, suggested that I try a hot Pilates class that she had been going to.  [Brigid and I have been workout buddies for over 20 years...running, (including a Chicago Half Marathon), yoga, TRX, Zumba, weight rooms, and even backpacking the Havasu Trail in the Grand Canyon.]  I love working out and getting sweaty, but the thought of being in a hot, (100 degree), humid room was so utterly unappealing.  It took me nearly two years to finally agree to trying hot Pilates.  

     The first few classes were pretty awful. I was so red-faced and wrung out that I had to step out of the room a few times to cool off...pacing in the lobby area and arguing with myself about why I should go back in.  At the end of those classes I was soooo spent. 

The studio where I take hot Pilates...downtown Palatine. forward to now.  This week marks 3 years that I have been attending hot Pilates classes on a regular basis.  I, not only got used to exercising in a hot room, but now feel like I NEED to be there at least twice a week.  Working out in a hot room makes my body feel so much better.  My joints are looser and the heat allows me to be more flexible.  Being able to move easier has definitely made me stronger.  

            I highly recommend it!
(...with modifications whenever needed, e.g. with my bad hip.)

With instructors, Robyn (owner) & Piera.  (Ashley is my other instructor.)

     So...along with cycling (indoors during Chicago winters), time on a rowing machine, weight workouts, calisthenics, and Pilates is definitely helping me meet my goal. 

Sunday, October 8, 2017

CT Scans #14 and Joint Disease in Cancer Patients

     Well...I was very close to being able to do it.  I was almost able to wait a full 6 months between CT scans this time. I initially scheduled this round of scans 6 months from my last ones, but unfortunately in late September, I had a couple weeks of feeling really crappy, (more than the usual fatigue and not just some achiness, but down right pain, especially in the bones of my left hip).  As I have done before, whenever I feel crappy for more than a few days, I convince myself that my cancer has figured its way around my chemotherapy and that I've entered the phase called "disease progression."  Despite trying to be as reasonable and rational as possible, I know that I'm not over reacting...the clinical trial report indicated that the average ROS1 lung cancer patient on Xalkori will have 19.2 months of disease control.  I've been on Xalkori for 55+ months.  (Pretty soon that will be 3-times longer than expected!)  

     Certain that my cancer was growing again, I moved my CT appointment up by a couple weeks. So last Tuesday I was in the CT tube again. I asked the radiologist to not only compare these scans to my most recent scans, but to also compare them to older scans.  I was concerned that, perhaps, the changes in my body were so incremental that the only way any demonstrative changes could be appreciated was by looking at scans from a few years ago.

The good news:  
     The day before yesterday the radiologist called me.  He looked back at my scans from 2015 and feels confident that my cancer is stable. Yay! So, for now, Xalkori continues to control my cancer below my neck. 

The bad news, mixed with some good news:
     The degenerative joint disease (arthritis) in my left hip, coupled with metastatic disease, appears to be worse.  The combination of arthritis and cancer in my pelvis and head of my femur have resulted in progressive joint deterioration. Hence the pain, and I now realize that dealing with pain is exhausting.  The radiologist said that, "...Under different circumstances, a person with a hip like this would talk to someone about a hip replacement in the future." What he meant was, people with stage 4 cancer don't get to get new hips.  I told the radiologist that I had just returned from the CancerGRACE Lung Cancer Patient Forum where I spoke to a ROS1 specialist, Alice Shaw, MD, PhD from Mass General in Boston.  Suspicious of significant joint disease in my hip, I asked Dr. Shaw if patients like me ever get new hips and she said, "Yes!".  Since we are living longer on new therapies, and our quality of life is such that we are able to continue to be active, she has a few patients who have had joint replacement surgeries.  Successfully.  At Mass General, these patients are seen in consultation by a sub- sub-specialist called an ortho-oncologist.  

     So...onto my next health adventure.  I made an appointment for later this month with a local orthopedic surgeon who specializes in hips.  Then, as needed, I'll seek a second opinion with an ortho-oncologist, and knowing myself, a third opinion as well.  

     Oh, also, my next brain MRI is scheduled for mid-November.  I'll keep you posted. And... always, please wish me luck!

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Tuesday, August 15, 2017

I Thought I Was Going to Die of Cancer...

...but now think I may die at the hands of white supremacists whose fire is being fueled by trump's support of their hate, bigotry and racism...or maybe by a nuclear bomb sent to the Chicago area by the North Koreans because of trump's ignorant and antagonistic rhetoric.  It sure seems like trump is going to get us, Americans, way or another. 

     I still may die of cancer.  I prefer that.  It may be sooner rather than later, if the Republicans and trump repeal and replace the Affordable Care Act with something that removes the pre-existing conditions clause and adds lifetime caps.  Despite recent failures to pass repeal and replace legislation, the Republicans and trump seem hell-bent on bringing it all up again because how else will they be able to pass tax cuts for the rich unless they take away health care from 30 million Americans and restrict access to care for those of us with existing conditions? []

     I also thought that the scary uncertainty of my cancer was the ultimate in unsettling life worries, but now I know that the uncertainties for my personal safety, and the safety of the people that I love, are much worse under this president.

     I am a Japanese American woman living with stage 4 cancer in a country with a very unstable president.  It's not possible for me to end this blog post on a positive note.  But, I'm not ready to give up yet.  I'm writing my Congressman, (as lame as he is) and my Senators to let them know how I feel.  I ask you to do the same.  Please.

Find your Representative:
Find your Senator:

      Last weekend we rode our bikes at the Chicago Botanical Garden with our friends Ann and Mike Kennedy, and saw the butterfly exhibit.  Around the world, people view the butterfly as representing endurance, change, hope, and life.

BTW...I can't bring myself to capitalize the "t" in trump; don't know why...just won't do it.

Saturday, August 5, 2017

Being Busy with My Leptomeninges

     This summer, like most of my summers, has been a busy time for me.  When we're not working, Wynn and I are usually out riding our bikes, meeting friends, working in our garden, hanging out with our kids, and fitting in a long weekend away.  The past few months seemed to fly by, and although we visited friends in NY in early July, when I looked at our calendar, we haven't done all that much in way of recreation.  What is abundant are medical appointments. 

     Earlier this summer I was experiencing some new symptoms.  They were very subtle and infrequent, and somewhat difficult for me to describe.  In mid-June I had an appointment with one of my many doctors and I did my best to share with her what I was experiencing.  All of my symptoms could be explained away, but they could also all be caused by a single problem...metastatic disease to my leptomeninges.  Here's what I've learned about the leptomeninges: 

     There are three layers of tissue that cover the brain and spinal cord.  Two of the layers are the arachnoid membrane and the pia mater.  These two layers make up the leptomeninges, and along with a third membranous layer and cerebrospinal fluid, (CSF), help protect the brain and spinal cord.  Sometimes cancer cells can spread, (or metastasize), to the meninges and/or CSF.  

     Symptoms may include: 
  • Headaches
  • Dizziness
  • Pain
  • Weakness or lack of coordination in arms and legs
  • Double vision
  • Seizures
  • Difficulties with speaking or swallowing
  • Difficulty thinking
  • Loss of bladder or bowel control
     I had experienced 5 of the 9 above symptoms...subtly and rarely, the most significant ones being pain in my back and a weird sense of clumsiness, and perhaps weakness, as I walked...on occasion.  So subtle was the clumsiness that I couldn't even articulate exactly how I felt, nor could I answer the doctor's more detailed questions.  

     As usual, I consulted my team of doctors.  Given that I had treatment for a metastatic brain tumor earlier this year and I continue to be on Xalkori, a targeted chemotherapy that does not cross the blood brain barrier, it was decided to work me up to rule-out metastatic disease to my leptomeninges.

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     Such a work-up entails MRI of the brain and the entire spinal column, and sometimes a spinal tap. So last week I was again in the MRI tube, but this time for a little over 3 hours. In the past, I've haven't had any problems with claustrophobia, but after the first 90 minutes in the tube, I signaled the tech and requested a short break. Being in the tube that long was definitely challenging.  

     The day after my MRIs, I was given the thumbs-up on my brain. There was no sign of leptomeningeal metastasis. The tumor that was CyberKnifed in March continues to shrink and there are no new tumors.  It took over a week to get the good news about my spine MRI.  Although there is no sign of metastatic disease to my leptomeninges, I have a bulging disc at L4-L5, likely causing my back pain and clumsiness. For now, since my symptoms have gotten better and there is a plausible, non-cancer, cause for them, I don't need to have a spinal tap.  (Yipee!)

     I am aware that my brain and spinal column are vulnerable to mets while taking Xalkori.  However, since easy access to the next medication I can try isn't quite ready, (it's not yet FDA approved), I'd like to stay on Xalkori for as long as possible. It's done me pretty well for 53 months and hopefully will keep working until the next medication is available.  

Wish me luck!

Side note:  I just read over this blog that I just wrote and I sound pretty matter of fact about the whole thing.  I guess it must be hard for me to weave into my story the sense of fear I felt when the idea that my cancer had spread to my central nervous system was first raised.  I remember taking off my sweater and the doctor saying, "Oh, you can leave that on for the exam."  My response:  "No...I'm're making me nervous with all this leptomeninges talk."  That fear kept me from sound sleep for several weeks which didn't start to ease until I received reassuring news about my brain.  Total relief only arrived when I heard the MRI of my spinal column did not appear to show signs of metastatic disease...7 weeks after I was first alarmed. These times of scary uncertainty are not only difficult for me, but also for those close to me.  And Wynn, not only is he worried for me, but he lives with me during times when I cannot get much needed sleep and am unusually cranky.  Cancer sucks for a whole bunch of reasons.  

Thursday, June 1, 2017

Rolling With the Punches

     Until today, this man has been my oncologist.  His name is Robinson Ortiz, MD and I credit him with saving my life.  Dr. Ortiz was the guy on-call the day I was admitted into the hospital, through the ER, for a metastatic disease work-up.  That was in December of 2012.  He was kind from the moment Wynn and I first met him.  He gave us terribly bad news, gently, so we could absorb the words he had to tell us.  

     As soon as it was established that I had non-small cell adenocarcinoma of the lung, Dr. Ortiz ordered genetic tumor testing for mutations in two genes  known to cause the type of cancer I have.  Based on my demographics, the chance that I'd have one of these was estimated to be 80-85%.  I had neither.  

     Dr. Ortiz then recommended testing for mutations in a newly described gene  called ROS1.  Earlier in 2012, journal articles associating mutations in this gene with my kind of lung cancer were first published. Dr. Ortiz strongly encouraged me to test for ROS1 mutations because there was an available targeted oral chemotherapy.  I was hesitant because I would need another biopsy, and the chance I'd have a ROS1 mutation, based on the studies he had read, was only 1%.  Eventually, he talked me into it, I was found to have one, and the rest is history.  

     Dr. Ortiz is leaving clinical practice and, as sad as I am, I understand his decision.  I even support his decision.  Dr. Ortiz is a husband and father of four sons, under the age of 5.  The youngest two are twins.  He is taking a non-clinical position which will allow him to have more time with his wife and sons.  

     So here's what I have to say to Dr. Ortiz:

  • You saved my life by testing my tumor for ROS1.  Back then, testing for ROS1 was new, and 4+ years ago, many most oncologists weren't testing for it yet. But you did.   
  • You never let me down.  Every question and concern I had, you responded to immediately.  
  • I'm certain that you took care of all of your patients like you took care of me, so I understand that there was little time for your family. You will never make the wrong decision when you prioritize them. 
  • Thank you for allowing me to feel like a partner in the management of my care. 
  • I am going to be just fine.  I trust you and your referral to your partner, Dr. McKian.   
  • I wish you all the best and will miss you.
  • And one last thing...I never thought you'd leave me.  I thought, for sure, I'd leave you first...if you know what I mean.  But, with your care, guidance, and wisdom, I've lived well beyond my expiration date.  How can I THANK YOU enough?

Saturday, May 27, 2017

CyberKnife Follow-up MRI and More on the BBB

     As enthusiastic as I've been about the CyberKnife procedure I had to treat my metastatic brain tumor at the end of March, the only way to know if it worked is to have another MRI.  So, that happened last week.  

     I was disappointed when the report stated that the lesion is still there - big enough to be measured.  But, the report also stated that it is smaller than prior to CyberKnife and is "less enhanced".  Overall, the report sounded like it was trying to tell me that it looks like CyberKnife worked.  I realized that among all the questions I asked before and during my CyberKnife procedure, I never asked what to expect of the tumor following radiotherapy. I know.  A few days after my MRI, Wynn and I met with the radiation oncologist.  She entered the room with a big smile on her face and said, "The lesion is smaller and less enhanced, so I'm very happy.  It appears the treatment worked."  Following radiotherapy procedures, and after tumors are exposed to radiation, they usually dissipate slowly.  I had to admit to the doctor that, in my excitement of getting my tumor zapped, I thought it was going to be burned to a crisp...fried...annihilated.  I used the word "poofed".  The doctor, apologetically, said that she usually tells patients what to expect - and perhaps she did, but in my over-zealousness to get the show on the road, I didn't hear her.  

     The other good news I received that day is that there are no new tumors seen on this last MRI.  

     Since my last blog post about the blood brain barrier, (BBB), I've received some replies and comments that had me asking more questions about it.  I asked a few experts more questions and learned that although the BBB's permeability is altered following procedures like CyberKnife, this change in permeability is usually temporary :( .  I was really hoping that the alteration in permeability would work well for me, allowing Xalkori to get into my brain and protect it - forever.  The other thing I learned was that since my tumor was relatively small and the overall amount of radiation I received was low, the change in my BBB would also, likely, be small :( .    

     For now, I will stay on Xalkori because it's working well for me below my neck and I will continue to get regular brain MRIs looking for metastatic tumors.  As long as any future tumors are treatable with CyberKnife, I will continue on Xalkori.  There are two new, second generation, targeted medications, (lorlatinib and entrectinib), that are getting close to FDA approval, both of which cross the BBB.  My hope is that they will be available to me, when I need them, either because they are FDA approved, or through a clinical trial.  I'm scheduled for another brain MRI in 10 weeks.    

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