GOODBYE 2010, welcome 2011!

Well, here we are, New Year's Eve, 2010.  Looking back on this year I have had some of my highest highs, including some amazing travel opportunities (Japan, Maui, Napa Valley, Central California Coast, Disneyland), as well as the lowest lows of my life (being diagnosed with cancer and dealing with other health issues).  It's been a roller coaster ride to say the very least, and if there is one thing that I have learned from all of this, it is that you just never know what life is going to bring you, and that you must roll with the punches.

This past week I had yet another lesson from the school of Go With the Flow.  If you have been following my journey, you will remember that back in March, my doctors had discovered that I had cysts on one of my ovaries, which we were monitoring every three months via ultrasound.  My doctor didn't seem to be concerned until I had my third ultrasound in September (after having been diagnosed with lymphoma in August).  The cyst had grown larger and more complex, and additional smaller cysts had appeared as well. She told me she wanted to do surgery to remove them, but of course I would need to get through my cancer treatment first.  I was devastated to learn that on top of everything else, I was going to have to go through yet another surgery, and have an even longer recovery time.

As you know, I completed my initial cancer treatment in mid-November with much success (thank God!) and we had scheduled my surgery to remove my ovarian cysts on January 7th, 2011.  I had decided that I would wait to return to work until after my surgery because it just didn't make sense to go back to work for three weeks and put myself through all that stress, only to have to leave again.  So in preparation for my January surgery, I had one more scheduled ultrasound right before Christmas, and then my pre-op appointment with my doctor this past Tuesday, December 28.  This surgery has been looming in the distance, and I've been all geared up for it, and mentally prepared to go in, get this taken care of, and put it behind me.

Well, once again my expectations were flipped upside down as we learned that the ultrasound results revealed that the large cyst that my doctor had been so concerned about had actually become significantly smaller.  My doctor told me that she would feel comfortable holding off on the surgery for now, and following up with another ultrasound in three months to monitor if we see continued improvement.  Now, this would indeed seem like very good news, right?  However, at that moment, this was the last thing I wanted to hear.  I had been mentally and emotionally preparing myself for this surgery for months, and all I wanted to do was get it over with and put it behind me.  I didn't want to postpone my medical uncertainty.  Gavin, my voice of logic and reason, was with me at this appointment.  He felt very passionately that if my doctor didn't feel that surgery was urgently needed, we should definitely not proceed, but I was not so sure.  He felt that postponing could be most beneficial, especially considering that if we waited and saw continued improvement, I may not even need to have surgery at all.  My doctor remained very neutral, and encouraged me to do what was best for me.  She understood my desire to just stick with the plan and move ahead with the surgery to put it behind me and find out what was causing these cysts, but she also said that she was OK with waiting to see if my condition continued to improve.

I felt extremely confused and emotional.  Canceling my surgery had implications that I just was not prepared to deal with yet--the biggest one being returning to work, which in my mind was at some nebulous point in the future... maybe the end of January, the beginning of February... we'll see how my recovery would go.  But without surgery, I would have no reason not to go back, and the thought of going back so much sooner than I had expected--like, in a week!-- was utterly terrifying...  Dealing with stress and responsibility again, having to get up early, make lunches and put on decent clothes and make-up everyday... Fielding questions from students, parents, co-workers...  These are all just things I am NOT looking forward to.  In addition, the thought of watching and waiting and postponing my medical issues was so frustrating to accept--I wanted to have these damn cysts OUT of my body.  I wanted to be done with my medical problems from 2010 and move on with my life.  The fact is, I still *might* have to have surgery a few months down the line.  It SUCKS not knowing what's going to happen.  The doctor gave us a few minutes to ourselves to talk over our decision, and after shedding my fair share of tears, I accepted Gavin's logic, knowing in my head this was the right choice, but emotionally I struggled immensely.

After this appointment, I went home and continued to have my biggest breakdown yet.  I cried all day long, just reflecting on all that I have been through these past few months, processing the decision I had made, and releasing all the emotions I was feeling--frustration, anger, apprehension, confusion, relief.  The next day I felt a thousand times better and was ready to move forward.  I know that ultimately not having surgery is a very good thing, and that returning to work and regaining my normal life and routine will feel most rewarding, once I get over that initial hump of the transition.

I am very much looking forward to raising my glass of champagne tonight at midnight, and saying GOODBYE to 2010, and welcoming 2011 with open arms and an open heart.  I know I have some very important resolutions to keep this year, beginning with a focus on good health and a plan to lose 30 pounds.  For good!  Even more importantly, however, I am resolving to live for the moment, and appreciate the blessings that life has to offer, especially the love and support of family and friends, because you just never know what will happen next.

Happy New Year to all of you, and I wish you much love, happiness and GOOD HEALTH in 2011!!

Our happy little family!  Here's a portrait from Christmas Eve.
We have so much to be thankful for,
and Santa was indeed good to us this year!

The Proof is in the Pudding

Well Friends, I'm not really sure where that saying came from or really what it means, but this week I am thrilled to report that I have some delicious pudding for you--pick your favorite: chocolate, tapioca, rice, butterscotch, or all of the above... this is it!  I finally have confirmation of fantastic news; what we have been hoping for, praying for, anticipating and suspecting all along.  The MRI results are in, and the impression from my radiology report reads, "Persistent bilateral enhancing orbital masses right larger than left showing overall significant partial regression compared with the prior study."  The plain ol' English translation of all that medical mumbo jumbo is this:  The Rituxan is working, and the tumors are
SHRINKING!!!!!!!!!!!

Now brace yourself for another cliché: A picture is worth a thousand words (sorry).  A few weeks ago I showed you photos of what the Rituxan has done for my outward appearance, but now I'd like to share with you some pretty incredible images of the inside of my head.  Yesterday (Thursday) I went to see Dr. Suddesh, my ophthalmologist, and on his computer, he pulled up my MRI from August as well as my MRI from Monday so we could compare them side by side.  I took pictures of his computer screen so I could document these amazing before and after images and share them with you.

This first shot is a cross section--imagine my head is sliced vertically, like a loaf of bread--and this slice is about in the middle of my head, right behind my eyeballs.  In these images, you are looking at my face straight on, so my right eye is on the left side of the pictures (by the "R").  The left image is from my MRI in August, and the one on the right is from this past Monday, just three months later.  Here you can see that all of the white areas around my eyes are the tumors.  You can see how much more white there is in the left image than the one on the right; the grey and black areas around my eyes are what normal tissue should look like.  In the image on the right you can see the greyish circles in the center of my eyeballs are my optic nerves.  They had been completely enveloped by the tumors.

MRI images: Before (from August, on left) and After (from Monday, on right)
The white areas around my eyes are the tumors.

This next picture is another cross section--now imagine my head is sliced horizontally--and this slice is through the center of my eyeballs.  This view of my head is looking from the bottom up, so imagine I'm lying on my back and you are looking up toward my head from my feet, and again, my right eye is actually on the left side of the images.  These images are particularly striking to me, as this clearly demonstrates just how much my eyes were protruding and bulging out of my head before, especially my right eye.  Look how far forward that right eyeball is--it sticks out past my nose!  Notice the grey streaks from my eyeballs back toward my brain.  Those are my optic nerves.  Notice in the image on the left how the tumor is pushing my optic nerve and bending it toward my nose, and in the image on the right it is now straight and normal looking.  In addition you can see how much more white (tumor) there is in the left image.

Another before and after, here, a horizontal cross-section.  Notice the
dramatic protrusion of my right eyeball in the "before" image,
and how much it has regressed in the "after" image.

So clearly you can see that in three months time, I have made great progress!!  Though I will admit that I was a tiny bit disappointed to learn that the tumors still exist, I am very satisfied to know that they are significantly reduced, and the outward appearance of my eyes is pretty much normal.  Dr. Suddesh took measurements again this week, measuring the distance from the bone at the outer corner of my eye, to the tangent of the front of my eyeball.  In August, that distance was 27mm, in my right eye, and 25mm in my left.  Last month it decreased to 24mm in my right and 22mm in my left.  Yesterday, the distance measured was just 20mm in both eyes!  All of my friends and family members who see me all the time can't believe how different I look.

Today I met with Dr. Vempaty, my oncologist, who was extremely pleased with my response to the Rituxan, and said that my progress was better than expected.  She told me that the Rituxan will continue to work in my system for the next several months, and that I can expect that the tumors should continue to regress.  She said it is possible that they will be eradicated completely, but they may remain, or even grow back.  We must monitor them now, watching and waiting to see what to do next.  I will go back for another MRI in three months, at the end of February.  If the tumors haven't changed or are smaller, then I will not need to do additional treatment, and I will go back in another three or six months for another MRI.  If we continue to see changes for the better, and the tumors continue to shrink or go into complete remission, then we can go longer between check ups.  At any point if the tumors start to grow back or if the lymphoma spreads to another part of my body, then we will have to take action with more treatment.  

In any case, I am NOT going to worry about that last scenario for the time being, but I am going to continue to focus on the positive, as I have done all along throughout this journey.  I can't help but marvel at the appropriateness of the timing of this news, in that it is received so near to the most wonderful holiday where we express our deepest gratitude for our multitude of blessings.  I tell you, there is nothing like a cancer diagnosis to get one thinking about life's priorities, and to focus on appreciating all the gifts we receive, both tangible and intangible, on a daily basis.  Next week I, for one, plan to raise a glass with my closest loved ones, and celebrate the myriad of reasons why I am thankful.  But trust me, the celebration of my appreciation will NOT be limited to next Thursday, November 25.  

MRI Today

Hi Friends!  Really not much to report, but I thought I'd post a quick update because my parents have been getting phone calls asking about my news, which means that people are wondering.  I've thankfully recovered from my cold and I'm feeling much better.  I still feel tired though, and have been taking naps pretty much everyday.  Sometimes I really do forget that I am battling cancer, because I just feel so "normal."

Today I went in for my MRI.  I thought I'd post a pic for those of you who have never seen one.  This was the third MRI I've had since August.  Luckily I'm not claustrophobic, as many people get very freaked out at the prospect of being confined in such a tight space for an extended period of time.  It doesn't bother me in the least.  I pictured a Maui sunset, and went to my Zen place, trying to ignore the raucous cacophony of what sounded like really LOUD, bad techno music, muffled through my ear plugs, all the while not being able to move.  Forty minutes later, I was done.

Unfortunately, I won't have any results to report until Thursday or Friday this week.  I meet with my ophthalmologist (did you try and spell it right? :-D) on Thursday, and my oncologist on Friday.  I will certainly let you know what they have to say about the status of my tumors, and what lies ahead in terms of future treatment, because I am obviously anxious to find out!  In the meantime, I am keeping myself as busy as possible to keep my mind off of it.  Based on my own observations, as well as family and friends who have commented about the dramatic difference in my appearance, I am very hopeful that I will have some good news to report later this week.

Last Treatment Completed!

After a very long week of feeling extremely crappy, I am delighted to report that as of today, I have completed my cancer treatment!!  That felt so good I think I need to say it again, louder.  I HAVE COMPLETED MY CANCER TREATMENT!!!!!

My EMPTY bag of Miracle Juice!

Why feeling crappy, you ask?  Nothing to worry about, really.  It's just that my immune system was too busy fighting cancer to be bothered with something as mundane as attacking a bug bringing a low-grade fever and common cold.  I pretty much spent the week reading, watching TV and napping, as I had absolutely no energy to do anything else.  Luckily by Saturday my fever was gone and I was just feeling the annoying cold-like symptoms of congestion and a dry cough.  I had been on the phone with the advice nurses and emailing Dr. V during the week, but there was nothing they could do for me other than telling me to rest and drink lots of water, which I was doing anyway.  Dr. V did ask me to go in to get blood drawn on Sunday.  We were both a little worried that I would have to postpone my last treatment.  But my bloodwork checked out -- just a little high white blood cell count, probably due to having this stupid cold.  Dr. V checked in with me before I went in this morning and gave me the go-ahead, as long as I was feeling good.

It was Gavin's turn once again to be my care-taker today.  I was pleasantly surprised to be led to the Royal Rituxan Suite, the same room where I had been for my first treatment with the flatscreen TV, DVD player and private bathroom.  I had called last week to request it, but they told me that Monday was crazy-busy, and there was no way.  Not sure what caused the change, but I wasn't about to complain!  I had yet another different nurse, Lisa, who was fairly warm and friendly.  I climbed into the super-comfy-deluxe hospital bed and we got started right away with the same drill. Luckily, I had no reactions to the Rituxan this time, but the Benedryl hit me hard, and I pretty much slept on and off for the first few hours.  My nurse ramped my Rituxan slowly, since I had reacted in the past, but we didn't have to stop it at any point which avoided delays, so we finished earlier this time.  We were there for about 5.5 hours from start to finish.

At home, right after finishing my treatment:  I give you, the smile of a cancer SURVIVOR.

So now what are the next steps?  Well, my MRI is scheduled next week on Monday 11/15.  I am very anxious to find out these results, as you can imagine.  I have an appointment next Thursday with Dr. Suddesh, the ophthalmologist (by the way--interesting aside-- I am very proud to report that, as a result of my cancer journey, I can now actually spell "ophthalmologist" correctly without looking it up.  Can you?  Try it without looking first.  Consider it your challenge for the day!)  This is a follow up to take more measurements and look at my MRI so he can hopefully tell me, "Julie, your tumors are GONE.  KA-BLAM!!"  I have another appointment the next day, Friday 11/19, with Dr. Vempaty to discuss the MRI and the next steps.

Now, it is possible that I still will need to do further "maintenance" treatments in the future, but it should only be one treatment at a time, perhaps every three to six months.  She did tell me that it is not guaranteed that the Rituxan will completely eradicate my tumors.  My type of lymphoma is supposedly "treatable, not curable," and is considered to be treated more like a chronic disease such as diabetes.  Still there is a chance that the Rituxan WILL completely dissolve them and send them packing, never to return.  That is what I am praying for, my friends, and what I humbly ask you to continue to pray for.  Based on the dramatic progress I have seen in my eyes so far, I truly, truly believe that this has been the work of God, and our powerful answer to prayers.  I hope to have some wonderful news to report to you next week, just in time for Thanksgiving.

Three Down, One To Go

Be afraid, cancer... be VERY afraid!

Today I went in for my third of four Rituxan infusion treatments.  I'm beginning to feel like an old pro at this, as I'm a quick learner.  This time, I decided to pick up some bagels for the nurses to grease the skids.  Thankfully,  I had a delightfully warm and friendly nurse today who expressed great appreciation for the thoughtful gesture, and took good care of me throughout the day.

Once again I was in a recliner, but it was a much nicer, more private station, bright and sunny, right by the window.  Today I had the pleasure of my dad's company, who over the course of the day proved to be a worthy opponent in a heated match of "Words With Friends" (Scrabble for the iPhone).  Much to his chagrin, I beat him, fair and square... he is far too principled to take pity on the cancer patient.

Dad and me at my sunny recliner station... notice the pleasant window seat!

We began the day with the same drill of premeds: Tylenol (given orally), then steroids, and Benedryl, administered through the IV, again inserted in the top of my left hand.  This took the better part of an hour, then it was time to start the miracle juice.  Unfortunately this time I reacted immediately to the drug sensing a fuzzy, itchy feeling in the back of my throat and along the sides of my tongue.  My nurse stopped the drip right away, consulted Dr. Vempaty who recommended we take a 20 minute break or so, followed by an additional steroid drug.  This seemed to do the trick, but set us back some time.  This, in combination with having to ramp up taking slooooow baby steps once we started up with the Rituxan drip again, made for a very long day.  The rest of the day went smoothly, but it was just long--almost seven hours from start to finish.

Still, I am feeling great overall, and still pleased with the progress we have seen in the last two weeks.  The only real side effect I've been continuing to feel is some grogginess and soreness around my eyeballs, but Dr. Vempaty agrees that this is a positive sign, that something is really happening back there!  I am excited that I am almost done with treatment!  I just have one more infusion next Monday, and then we will do another MRI the following week to get an accurate measure of what this drug is truly doing for me.  I'll have a couple of more follow up appointments, and then hopefully be done with this for good--or at least a long time!

I still have my surgery to remove my ovarian cysts (most likely unrelated to cancer, but we're taking them out, just to be sure) looming, once I am through this, and scheduled for January 7.  I've decided it would be far to stressful and disruptive (for me as well as for my students and colleagues) to go back to work for just three weeks before my school's winter break, especially during one of the most stressful times of the year, and then be out again.  I think it just makes the most sense to continue my leave of absence until after I am completely healed from surgery and 100% healthy again.

In the meantime, I am getting plenty of restful time at home, and enjoying the beginning of the holiday season, spending time with family and friends, getting into the spirit.  We had a fun Halloween weekend, especially now that Ewan really understands what it is, and is having so much fun with dressing up and trick-or-treating.  Here's a pic of our adorable little pirate.

Ahoy, mateys! It's Nobeard, the pirate!

Real Progress!

Two infusions down, two more to go!  Well my friends, we are seeing a visible difference here, and I wanted to show you some before and after pictures to put into perspective what this miracle drug is already doing for me after just one week:

BEFORE:

Protrusion and swollen lid, photo taken 10/18, just before first treatment.

AFTER:

Noticeable improvement and reduction of swelling in upper lid and below eye.

BEFORE:

A little blurry, but you can see how swollen my eyelids are the day of my first infusion.

AFTER:

After one week you can really see a reduction in the swelling and protrusion!

And one more "after" angle, without glasses.

Needless to say that I am thrilled.  Not only do I have personal observations and photographic evidence to document this progress, but I also have scientific measurement.  Last Wednesday (10/20) I went to visit Dr. Suddesh, my ophthalmologist, who took measurements and confirmed that my eyeballs had indeed receded by give or take 3mm.  This is great news!  It shows that this stuff is already working, and working fast!  

Aside from feeling a little sluggish the day of and the day after my treatment, I really have felt great all week long.  I really haven't experienced any noticeable side effects from the Rituxan, just some soreness in my had where the IV was, and also some tenderness and aching behind my eyeballs, particularly when I look far right or left, or up or down.  Nothing intolerable in any case.

Today's infusion went off without a hitch.  My mom accompanied me today to the busy infusion center.  Unfortunately I was not blessed with the Royal Rituxan Room Suite this time, but instead I had a spot at a recliner station, more like a bunk at a Best Western.  I also had a nurse who could have used a serious personality infusion, but at least she had good IV skills, and I experienced much less pain and swelling in my hand today.  Today the infusion went more quickly, "only" taking five hours, as opposed to the seven hours it took last week.  It was the same drill: an hour plus of pre-meds (steroids and Benedryl which successfully prevented an allergic reaction), followed 700 mg of Rituxan, which they were able to administer more quickly today, since I took it well last week.  

Dr. Vempaty (my oncologist) happened to stop by in passing, and she was practically gushing with excitement at the news of the measurements that Dr. Suddesh had taken.  She told me that this is quite common to see in patients, and that again reiterated that the Rituxan just "melts" these tumors away.  I am so very pleased to know that I am halfway through my treatment and already seeing such results.  Like water to the Wicked Witch of the West, this miracle drug is taking these tumors DOWN.

First Infusion

Trying to keep busy (while not asleep!) in my deluxe private room with a comfy bed.

Well, today I went in for my first of four infusions of the Rituxan drug, which will hopefully begin shrinking the tumors in my orbits, and fast!  The infusion center is in the Santa Clara Kaiser medical office building right next door to the oncology department.  We arrived for my appointment at 9:30 in the morning, after dropping Ewan off at pre-school.  Gavin's parents drove down from Davis later that morning to pick up Ewan before lunch and take him home so we wouldn't have to worry about what time we finished, since we had no idea what time that would be.

Shortly after we arrived we were escorted into a private room equipped with a hospital bed, flatscreen TV, and DVD/VCR player, which pleasantly surprised me, as I was fully expecting to be in the large room, at a station with a recliner, with nothing to separate me from neighboring patients but flimsy curtains.  The nurse told me that they gave me a room since I had such a long day ahead of me, and that I would be more comfortable.  Sweet!  I even had my own bathroom!  Not quite the Westin, but not bad for Kaiser.  Definitely a good sign.

The nurse took my vitals (blood pressure and temperature--which she continued to take regularly throughout the day) and set me up with my IV, inserting it into the vein in the top of my left hand.  She started me on the pre-drugs, which included a steroid as well as Benedryl, to ward off any potential allergic reactions to the Rituxan.  Other than the obvious discomfort of having a needle stabbed into my vein and the bizarre feeling of the room temperature --i.e: COLD-- liquids begin disseminating through my body, it wasn't that bad at all.  I definitely felt drowsy from the Benedryl, and took full advantage of my cozy bed, frequently dozing off.

It took the better part of an hour to get through the pre-meds, and then my wonderful nurse (Anna) began the Rituxan drip.  I really didn't feel much of anything for the most part, except at one point after I was maybe another hour in to the Rituxan, I began to feel some itchiness in the back of my throat and my ears.  Anna immediately stopped the Rituxan drip and gave me another does of Benedryl, which I felt right away and consequently knocked me out.  We waited another 15-20 minutes more before starting up the Rituxan and it was smooth sailing from there!  Other than being very groggy, I experienced very few side effects at all.  I had had no nausea, fever, or chills.  I had a normal appetite, and managed to eat my lunch and snack throughout the day with no issues at all.

All in all we were there for seven hours from start to finish.  Quite a boring day for Gavin, who sat patiently by my side constantly, but he managed to keep himself busy on his laptop.  I was hoping to be more productive with all that time, knitting or reading, but it was hard to concentrate, and at times even keep my eyes open.  Still, I am incredibly pleased that everything went so well, especially because they say that the first infusion is always the most difficult one.  My nurse, Anna, told me that I shouldn't expect to feel any more side effects after returning home, unlike many other, harsher chemo drugs, which don't hit you until later.  I am pleased to say that she was right so far!  Other than being a little low-energy, I feel very good tonight, and expect to feel quite normal tomorrow.

It feels so wonderful to have finally started treatment now, and to know that I am on my way to REMISSION.  I want to take the time to thank each and every one of you who has been following my journey for every single little thing you have done for me.  Your prayers, thoughts, healing vibes, encouraging comments on the blog, on Facebook, through emails, texts, phone calls, visits, meals, flowers, fruit bouquets, cards... I have simply been surrounded by a flood of love and support that is simply overwhelming.  I appreciate it SO MUCH, and I can't even put into words how much it means to me.  I am so touched, and so encouraged and please believe me when I tell you that YOU are giving me the strength and faith to fight this fight.  YOU are easing my burden, and I love you all so much.  Please forgive me if I can't reply personally to every single email or comment... but do know that I am filled with gratitude for you, my loving and devoted army, and we WILL prevail in this Battle of Healing, together.

The Results Are In

It has been nearly two months now since I had my surgical biopsy and was diagnosed with lymphoma.  Since that time, it seems all I have been doing is waiting.  Waiting for pathology results from my biopsy.  Waiting to meet with the oncologist.  Waiting to get a second opinion.  Waiting to obtain all of my records for my second opinion.  Waiting to see if the antibiotics suggested by the doctor who gave the second opinion had any effect.  Waiting for the MRI results after the antibiotics treatment to see if there the tumors showed any signs of shrinkage.

Well, I had my MRI this week and we finally received the radiology report today and...

Drumroll please.......

The antibiotics didn't work.  I am actually quite relieved, to be perfectly honest.  Though the antibiotics were an intriguing possibility, the fact is my doctor had no idea of the protocol for such treatment and no idea of what we could hope to expect.  I definitely had my reservations about going that route, as there are too many unknowns and since it has received such limited success.  I am very happy to have ruled that out as an option, and move on to a concrete action plan now, and know that I am finally moving forward with treatment that has proven to be extremely successful on many, many patients.  I have a schedule and a timeline.  Ever the planner, this gives me a great sense of comfort.

I will begin my Rituxan infusions on Monday morning (10/18).  This will be the first of four weekly sessions.  The drug is administered through an IV veeeeeeerrrrrrrrryyyyyy slowly, especially the first time.  I will also be receiving a number of "pre-drugs" to help combat some of the side effects of Rituxan (nausea, fever, chills).  I was told I will be in the infusion center for 6-8 hours.  Hopefully I will not have a bad reaction to the drug (this is unusual), but if I do, they are equipped to handle it.

I am definitely nervous and anxious as this plan has finally solidified, and is therefore now so much more "real" to me.  During this long waiting period, I did my best not to think about my situation too much, and at times even "forgot" that I have cancer.  I've felt healthy and good this whole time, fortunately not experiencing any uncomfortable symptoms of this disease.

Now I know that things are going to change.  I am aware that the infusions will be less than pleasant.  It's starting to sink in for me that although this first course of treatment will last just four weeks, I will still continue to have to deal with this for a long time to come, and possibly for rest of my life.  I will proceed to have scans and potentially "maintenance" therapy regularly for quite some time to come.   I admit, I am scared.  Who wouldn't be?  Yet in a weird way, I am excited, eager, and even --dare I say-- happy.  Today, Dr. Vempaty told me that the result she expects from the Rituxan is that the drug will literally "melt" my tumors away; simply dissolve them.  This notion gives me such a thrill I can't even describe.  An absolutely exhilarating scenario.  I have been waiting so long, and now I am chomping at the bit to kick some serious cancer-butt!  I want it OUT of my body.  Don't hold me back.

It's time.

Results Coming... Soon

So I realize I haven't posted an update in a while, but the reason for that is... well, there really is no new news.  I finished my antibiotics a week and a half ago, and I have just been waiting.  And waiting.  And waiting.  Frankly, I'm getting a little tired of it, but I've been doing the best I can to fill my days with fun activities and people I love.

The birthday girls and party boy.

Luckily, my "Birthday Week" just passed which helped to while away the time, and I managed to extend the celebration, as any red-blooded American gal should.  It began with a surprise party on Saturday 10/2, thrown by my wonderful husband and friends, who continue to shower me with love.  They really did pull it off flawlessly, and received the most sincere, completely astonished, open-mouthed reaction from me.  I really had NO clue.  So fun!  The next night, we also celebrated my mom's (10/2) and my birthday (10/4)  with our whole family.  My birthday was Monday, and I indulged in a pedicure with a good friend and a fancy dinner date with Gavin.  The week culminated in a fabulous long weekend in Cambria (on the central CA coast), where we rented a beach house with friends their and little boys.  We lounged about, drank wine, frolicked on the beach, drank wine, played games, drank wine, watched the little boys play (and argue... just a little).  I played my guitar, sang songs, knitted.  We managed a mini road trip on Saturday to visit the gorgeous Justin Winery outside of Paso Robles, and we hit a pumpkin patch at Jack Creek Farms in Templeton on our way home.  Something to please everyone.  It was just what the doctor ordered.

Self-portrait at sunset.

Returning home after such an amazing weekend was a little hard, and I definitely had the post-vacation blues today, triggered by a cancellation for my doctor's appointment with the ophthalmologist--a post surgery follow up.  The closer I get to knowing results, the more apprehensive I become.  My MRI is scheduled for tomorrow morning (Tuesday), and my appointment with Dr. Vempaty, my oncologist is on Thursday.  The MRI will determine what treatment path I take.  We will know that the antibiotics worked if my tumors appear to be smaller, however, I am feeling more and more doubtful that this will be the case.  I'm not being pessimistic, just realistic.  Dr. Levy told me that I should notice less swelling in my eyes if the meds were working, but so far I haven't noticed that the swelling has diminished.  It's OK though.  If the antibiotics don't work, I won't be disappointed.  I really am ready to begin Rituxan on Monday (10/18).  Though I know I made the right decision to take the time and give this a shot, I'm tired of waiting, and I really, really, really am anxious to move forward with treatment now and get on with my life.  Stay tuned for another update after I meet with Dr. Vempaty on Thursday.

Impatiently Waiting

So it's going on six weeks now since I had the surgical biopsy of my eye.  By tomorrow, I will have completed my two weeks of the doxycyclene antibiotic treatment.  It has been a pretty uneventful week and a half.  I'm tolerating the antibiotics fairly well... they just make me a little queasy in the mornings, as I am supposed to take them on an empty stomach.  It's hard to tell if they are having any effect on my eyes.  I am still seeing swelling in the mornings, especially in my right eyelid, but I don't know if that is still residual from the surgery.  


Other than that, physically, I'm feeling great.  My eye is pretty much completely healed from the surgery.  Though I am "healthy" and capable physically, I decided not to return to work for these past two weeks that I have been taking antibiotics.  I thought it would be way to stressful to come back to my classroom and try to pick up the pieces after having been gone for a month, then have a two-week break (our school is on a modified year-round schedule, so the whole school is off from 10/4-10/15) and then start my Rituxan treatment on October 18th and be gone again.  It would be way too disruptive for my students as well.  Teaching requires so much of me mentally, emotionally, and physically, that I know I wouldn't be able to do my job well right now, and still have the bandwidth to focus on healing.  I thought it best to just sort this all out first and then go back to work once I kick these health problems to the curb. 


As lovely and relaxing as it has been having this downtime, I am starting to grow a little impatient as I wait.  Once I've completed the antibiotics tomorrow, I have to wait TWO MORE WEEKS before we can see if it has had any effect on the tumors.  I have an MRI scheduled for October 12, and a follow up with Dr. Vempaty on the 14th.  At that point we will determine the next step.  If the MRI shows the tumors are unchanged, then we will begin Rituxan on the 18th, as scheduled.  If the tumors are visibly smaller, well, then things could get interesting.  


I know the chances of that are so slim, but there is a part of me that feels like it COULD happen.  Another component that makes it more plausible in my mind, is that about two and a half years ago, I had an unexplained illness for several weeks, where I experienced symptoms (fever, chills, fatigue, cough) that are common to chlamydia psittici (though I have no idea where I would have contracted the infection).  Still, the timeline is interesting, in that soon (maybe 6-12 months) after this unexplained illness, I developed the symptoms in my eyes which led to the lymphoma diagnosis.  Could that unexplained illness have been chlamydia psittici, and if it was, could it have triggered this lymphoma?  Seeing that so many other things about this case are so unusual (my young age, bilateral involvement--meaning both eyes are affected), I just am feeling like I wouldn't be so quick to dismiss that possibility.  


Yet, it is one thing if the lymphoma was caused by the infection, but entirely another if the antibiotics prove to be effective treatment.  Apparently, this type of treatment has only been successful in very few cases in few parts of the world, mainly in Italy.  If the antibiotics work on me, I really don't know what will happen next.  I know that my oncologist, Dr. Vempaty, has never treated anyone this way before, and I wonder if she has any idea of the protocol for how to administer this.  A good friend of ours who is also a doctor suggested that we ask around and find out who IS the expert on this type of treatment (probably one of these Italian doctors), and encourage Dr. V to get on the phone to Italy.  Who knows, hopefully she already has put in her own research.  I'm sure she will have many of the same questions as I have:  What will happen next?  Will I have to repeat the antibiotics?  In how long?  How often?  Will this put my cancer in complete remission?  How often will we need to scan?  What are the chances for a relapse?  Our doctor friend also told me that if it does work, I should prepare myself, as there will probably be a lot of medical interest in me.


Alas, here I go, furiously spinning my wheels into deep hypothetical mud.  This is one of the problems of having too much time to sit and think.  It's just so frustrating to not know what the next step is, and having to just WAIT.  I want to know what my course of treatment will be.  I want to know when I will return to work.  I want to know how this will all affect the other, parallel medical issue of my impending surgery to remove my ovarian cysts.  I am very much an organizer and a planner, therefore, I find this lack of control both frightening and unnerving.  Yet I know I need to let it go.  A dear friend recently sent me a little laminated sign that reads, "We make plans, God laughs."  I have it hanging right next to my computer as a gentle and comforting reminder that I am indeed not in control, and I need to trust in my faith, and know that I will be taken care of.  

A Coastal Distraction

We had a lovely, though brief, getaway to Monterey this past weekend.  We got a bit of a late start on Saturday, as we had a morning commitment and couldn't leave until after lunch.  Ewan "napped" in the car.  Gavin and I initially planned to head to the beach that afternoon, and save the aquarium for Sunday when we would have more time, but Ewan would hear nothing of it and insisted we go THAT afternoon.  We checked into our hotel to drop our stuff off, then headed to the aquarium and spent the next two hours ooohing and aaaahhing and the sharks, fish, otters, crabs, sea cucumbers and other delightful creatures.  The next day we went to one of our favorite places on Earth: Point Lobos natural reserve, where we scrambled around the rocks exploring the tide pools, where we found dozens of little crabs hiding in the crevices of the rocks.


Driving home, I received a phone call from someone who was a cancer survivor.  She had received my name through a Leukemia Lymphoma Society program called First Connections, where they try to match up people who have been newly diagnosed with another survivor who has had a similar diagnosis or experience.  This gal is my age, and was diagnosed with Lymphoma when she was 31 and had a one-year-old daughter.  She had a much more aggressive disease than I have, and therefore underwent more strenuous chemo treatment, but she has been in remission for 5 or 6 years now.  It was so great to be able to talk and share stories with someone in a similar situation, and to be inspired by her story of survival.  


I have to say, I am so impressed with the Leukemia Lymphoma Society (LLS), and with all of the resources they provide.  Some of you may remember that five years ago, I participated in a Team in Training Event, and raised money to support the LLS as I trained (and later completed) the San Francisco Kaiser Permanente Half-Marathon.  Many of you reading this probably even donated money to support me.  Completing that half-marathon was by far one of the top accomplishments of my entire life.  I find it so ironic (or is it more like serendipitous foresight?) that the organization that I raised nearly $5000 for is the one that supports the cancer that I am diagnosed with 5 years later.  In any case, I hope to become more involved with LLS in the coming weeks, and possibly even participate as a Team in Training "Honoree," and work with the run team that is training for the winter events by helping inspire and encourage them.  It will feel so good to be able to give back to this wonderful organization that has given me so much.

My Crazy Roller Coaster Ride

If there is one thing for certain, God is keeping my life interesting.  This has been a weird week to say the least, with some big ups and downs.  This feels just one big roller coaster ride, and the course seems to keep changing as it goes along.

So where did we leave off?  Oh yes.  Waiting most of the week for Dr. Levy's 2nd opinion to come through after I delivered my records to him last Friday.  I'll get to that.  In the meantime I've had a separate medical issue that I've been following up.  Back in March, we discovered an ovarian cyst that was causing me some discomfort.  I had an ultrasound and it appeared normal and benign and no big deal.  My OB/Gyn recommended we follow up in three months in June, which we did, and once again she said it appeared normal and benign, but again she recommended following up in three months which brings us to September, for those of you not keeping count.  So I went in last week and was expecting to receive another email telling me everything was A-OK.  Unfortunately, that wasn't the case.  On Tuesday as I was driving home from my chemotherapy orientation class and pulling into the Safeway parking lot, my phone rang and I immediately recognized the Kaiser phone number that I have become oh-so-familiar with.  I was surprised to hear the voice of my OB/Gyn.  "My, a LOT has happened since we last spoke," she told me.  "Ummm, yea... Big time," I agreed.  She proceeded to tell me that the simple cyst that we have been monitoring has now grown larger and more complex, and there were two additional cysts that have appeared as well.  She told me that she believes them to be benign, but given my recent medical developments she felt it important to remove them.  She told me that my lymphoma treatment obviously trumps this in importance, but after I'm through with the Rituxan, she wants me to have another ultrasound in November, and if things look the same (or worse) she wants to schedule surgery for the end of November or early December.  If surgery can be done laparoscopically, my recovery time will be 1-2 weeks.  If they need to do open surgery, recovery is 4-6 weeks.  They won't know until they actually get in there which type of surgery it will need to be, and they will possibly need to remove the whole ovary, depending on what they find.  Of course she said it is possible the cyst(s) could go away between now and then, but it probably isn't likely.  Definitely NOT news I wanted to hear on top of everything else going on right now, but I'm trying to take it in stride and compartmentalize my feelings about it.  I'm putting it on the back burner so I can focus on my lymphoma treatment which I need to put as my first priority.

The next day (Wednesday) I finally heard back from Dr. Levy.  He agreed with my diagnosis, though he didn't believe there was sufficient evidence to show that I have lymphoma in my bone marrow and abdomen (good news!)  He did offer up another very remote possibility... apparently there is a very rare infection called chlamydia psittici.  It can be transmitted from birds (usually pet birds, parakeets, parrots, etc.) to humans, and in a few cases has triggered this type of ocular lymphoma that I have.  In rare cases where this has happened, the lymphoma has been successfully treated by antibiotics.  He recommended trying a round of antibiotics for two weeks before attempting Rituxan, though he said that it is a long shot and most likely it will not work, and I will probably still need to do Rituxan.  He said he was willing to talk to Dr. Vempaty, my Kaiser oncologist, about it, so I put them in touch.  We met with Dr. Vempaty this morning, and she agreed that though this is a long shot, there is no harm in giving the antibiotics a try.  She didn't feel that I would be endangering myself in any way by waiting a few more weeks to start RItuxan. Part of me was frustrated by this suggestion, as I had been all geared up to start my infusions on Monday and move on with my life--that last thing I wanted was yet another delay.  On the other hand, if I forced myself to take a step back to look at the big picture, I realized that this slow-growing cancer has likely been in my head for two years. What is a few more weeks in the big scheme of things?  I had to agree with these doctors: Not much.  There isn't really that much to lose, and potentially, unlikely as this scenario may be, there could be a great deal to gain.  The remote possibility of treating lymphoma with antibiotics seems quite intriguing and exciting!  

I'm not getting my hopes up though.  Most likely I will start Rituxan in four weeks' time, and I will mentally prepare myself for it.  I started the antibiotics (doxycylene) today and I will take them twice a day for two weeks.  We will wait two more weeks and then do an MRI to see if they have had any effect.  If they work, Dr. Vempaty told me that she thinks it would be pretty miraculous and she would write a case study on me (not exactly the 15 minutes of fame I would have hoped for, but hey, I would take it.)   Still, to keep the ball rolling, we have scheduled Rituxan to start on Monday, October 18, assuming I will have to.  I am feeling good about the decision to try the antibiotics though. Who am I to question a brilliant, renowned, Stanford oncologist with countless amounts of knowledge and experience?  I also figure, if I don't give it a try, I will probably look back and think, "Oh I shoulda, coulda, woulda,..."

To say the least, it has been an emotionally and mentally exhausting week.  In light of all of this week's developments, we decided to scrap all of our plans this weekend (thanks to friends and family that we are flaking on for understanding!) and get out of town.  The three of us are leaving for Monterey tomorrow to spend some time at the beach, go hiking, and take our little dude to delight in all of the marvelous sea creatures at the aquarium.  I feel like the ocean air will do us a world of good, and I am really looking forward to getting away and restoring my spirit by breathing in that fresh ocean air.  I can't wait!

Well this has turned into quite a novel now.  I've never been very good at brevity.  Thanks for trudging through it all with me, and for continuing to stand by my side through this all.  I really, really do appreciate the continued prayers and positive vibes, and ask that you please keep them coming with increased fervor.  Miracles are indeed possible, especially through the power of prayer from this amazing network: you, my beloved family and friends.  I love you, and wish you a fabulous weekend.

Progress Toward Beginning Treatment

I realize the last post was a bit of a downer, as I wrote it on one of only two bad days that I have had so far throughout this whole crazy experience.  I know it's natural to have ups and downs, but I want to reassure you, my dear friends and family, that I have really been mostly up, and remain up--and I ask you to remain up with me.  I am feeling very encouraged and optimistic, despite a few small setbacks.  There have been a few frustrations this week, trying to get all of my medical records in a timely manner from the Black Hole that is Kaiser Member Services, but as of yesterday we finally obtained what we needed (thanks to my wonderful and tenacious husband who would not take no for an answer), and delivered them to Dr. Levy at Stanford who will be offering his 2nd opinion.  After speaking to Dr. Levy on the phone last week, he seemed to agree with the treatment plan that my Kaiser docs are proposing, but he wants to make sure that he agree with their diagnosis, and therefore needs to see my pathology slides, CT scans and MRI images.  Hopefully we will hear from him very soon.  

I met with my Kaiser oncologist, Dr. Vempaty, again today to ask several more questions.  We decided to go ahead and schedule treatment to begin on Monday, September 20.  I will go in for my first of 4 weekly infusions of the Rituxan drug (this is the non-chemo drug that only attacks the cancer cells and not the healthy cells, therefore causing fewer side effects than chemo).  That will give a week for Dr. Levy (the Stanford doc) to look over my records and hopefully concur with my current diagnosis.  If he disagrees-- well, then we will cross that bridge at that time. This coming week I will attend an orientation for the infusion clinic at Kaiser, and continue resting, reading up and preparing for treatment.  (I have been on medical leave for these past three weeks since my surgery, deciding that it was best for me to focus on figuring out my treatment options and not have to worry about the stress of work right now).

BEST case scenario, I will have my first infusion on the 20th, take off Tuesday the 21st to recover, and return to work on Wednesday the 22nd and work the rest of that week.  The following week I would follow the same pattern: infusion on Monday, rest on Tuesday, work Wednesday through Friday.  That will take me up to my school's two-week October break which begins on the 4th, and I will finish the other two infusion treatments over the break and return to work full time after the break on the 18th.  Of course, this is all depending on how I feel and how well I react to the treatments... I have no idea how fatigued I will be, but this is what I am hoping for.  I miss school terribly--my friends, colleagues and students-- and I am anxious to get back to my normal life again!  I really like the idea of coming back part time for the two weeks before break so that I can ease back in--I'm sure it will be an adjustment after being gone for so long.  After I receive the four weeks of treatment, we will wait six weeks and then do another MRI to see how the cancer responded to the drugs, and see if I need additional treatments (fingers crossed that it will work!)

So that is the latest update.  I have been so grateful to everyone for all the well-wishes, positive vibes and prayers that have continued to come my way -- not to mention all of the delicious meals that have been provided by my fabulous colleagues!!  We are so incredibly appreciative of all of the support we have received... it truly means so much to us.  I am REALLY looking forward to jumping over this health hurdle and returning to life as it was before!  

Two Visits to Oncology

Thanks once again for the continued thoughts and prayers.  Here is the latest update.  Yesterday (Thursday) we went to see Dr. Sudesh, my ophthalmologist.  He removed the stitches in my eye, which luckily was a painless process, and answered as many of our questions as he could, but really most of our questions needed to be directed to oncology. He was pleased with the healing progress, as my eye is SO much better than a week ago.  The swelling has gone WAY down, and it feels way less irritated now.  We booked a follow up appointment about 6 weeks out, so that he can check on me after I have received treatment for the lymphoma. 

This morning we went to meet with a second oncologist at Kaiser, Dr. Vempaty.  I liked her much more than the first oncologist we saw, as she seemed much more experienced and knowledgeable, and just easier to communicate with. We should be able to see her from now on.  We met with her for close to 45 minutes and learned some new information.  My full pathology reports are now in, and my diagnosis is Low Grade B Cell Lymphoma, stage 4A. Earlier in the week the first oncologist, Dr. Zhu, had called me to tell me that the results of my bone marrow biopsy were back and that it was clear, however, this morning Dr. Vempaty told me that the results from another test came in and as it turns out, they did discover a small percentage of lymphoma cells in my bone marrow.  This was very disappointing to hear, however, it sounds like it really doesn't make a difference in regards to treatment.  Dr. Vempaty told us that she, too, recommended treatment with Rituxan alone, with the goal being that we want to balance attacking the lymphoma with my quality of life, meaning sparing me the harsh side effects of chemotherapy. She said that we cannot "cure" this type of lymphoma, but we can lessen its impact.  She told us, the chance of shrinking the tumor with Rituxan alone is 60%, with a 25% chance complete remission.  If I do not respond to the Rituxan, then we can escalate the treatment to a combination of Rituxan and chemo (R-CVP which is less aggressive, or R-CHOP, which is more aggressive).  I asked her if we went for the chemo right away if the chances of affecting the tumor would be higher, and she said yes, it would, but it didn't really matter because the goal was not necessarily to completely eradicate it, but to control it so that it is not impacting me.  She also said that this isn't like some cancers where you need to hit them as aggressively as possible the first time around.  She said that we can start with the least invasive treatment to see how the cancer reacts, and progress to more aggressive treatments if the initial ones are not effective.  The idea being, to prevent putting me through chemo if it wasn't absolutely necessary.

After leaving our appointment, we went downstairs to request all of my records to take with us for obtaining a second opinion outside of Kaiser.  I was able to obtain a contact through a good friend of my dad's to Dr. Ronald Levy, who is head of the oncology department at Stanford.  I spoke with him on the phone, and he said that, assuming my diagnosis was correct, he agreed with the course of treatment the Kaiser doctors were proposing for me.  As soon as I obtain my records, I will get them to him so he can review them and let me know if he agrees with their diagnosis.  Once I hear back from him, and assuming he agrees, I will schedule my first treatment at Kaiser, so hopefully that will be the week after next.

I am still feeling like my prognosis is good, and that I have many options for my course of treatment, though I must admit, today was harder for me for some reason.  My emotions are like a roller coaster.  I've been on such a high from all of the love and encouragement I've been receiving from all of you, but today I had a bit of a downturn.  It's just really sinking in now what all of this entails, and it's hitting me how scary and serious this is, and how I really can't believe that this is happening to me, and how I really, really wish I wasn't going through all of this.  I think about before all this came about, how great things were going in my life with everything: my family, my job, my friends, my travel etc.  All of a sudden, the rug has been yanked out from under me and i just feel like I am spinning in space.  Still, deep in my heart I know that I am strong.  I will pull through this.  I believe so truly that God has a plan for me (that includes me sticking around here on earth for a long time to come), and I have faith that everything will be alright in the end, and I will be all the stronger for it.  It just isn't easy.

I know I probably sound like a broken record here, so forgive me if I keep repeating myself, but I again want to thank you for your continued support, through your prayers, in your messages to me, your positive thoughts and vibes, and your love.  I am so blessed, and SO grateful.  Truly, truly grateful and indebted to you.  I can't imagine walking this walk alone.  I am a very lucky girl.

A Humble Request

Hello Everyone.  I wanted to let you all know what is going on and some of you I just don't talk to regularly enough.  I wanted to do a bulk request for all of your prayers and positive vibes, as I received some scary news today.

As many of you know, I've been experiencing protrusion and swelling in my eyes for the past year and a half or so. Doctors initially thought it was thyroid related, but all of the blood tests said otherwise.  Then they thought it was allergies, but the test didn't really reveal anything either, and the symptoms didn't add up.  This summer the doctors found a lump in my breast, and I subsequently had a biopsy, which thankfully revealed that the mass was benign. However, the pathologist noted that there was something unusual in the tissue, possibly pointing to some sort of autoimmune problem, and I was referred me back to my primary care physician.  After more blood tests and consultations with the rheumatologist and endocrinologist who all agreed that they didn't believe this was a thyroid issue, she referred me back to the ophthalmologist I had seen a year ago.

I went to see him last Friday, and he took some measurements.  My eyeballs were protruding 3mm more than they had been last September.  He thought that there was a good chance it could be Thyroid Eye Disease, and he said it was not unusual to have this despite normal thyroid levels in the blood.  He said this was an easy diagnosis, we just needed a CT scan.  So I went in this past Monday for the scan.  I was told I'd hear back in a day or two.  The doctor called me an hour and a half later.  He said it was clearly not what he had thought, and that there was definite abnormal inflammation behind my eyeballs, and told me he wanted me to have further blood tests and an MRI.  I went in for blood tests on Tuesday, and scheduled the MRI for Thursday.  Before going in for my MRI, my doctor called me to tell me that he spoke with another doctor on his team who was a specialist in oculoplastics and orbital abnormalities, and he wanted me to see him.  He also mentioned the possibility of doing a biopsy on my eye, going in with a needle through the crease of my upper eyelid to obtain a tissue sample.  They scheduled me to get in to see him the next day (which was today).

The news was not so great after this meeting. :-(  It turned out that after looking at my MRI, the tissue where the inflammation (or tumor) is, is too difficult to reach with a needle.  Instead, they have to do a procedure called a "lateral orbitotomy" where they make an incision in the side of my eyelid, and remove a piece of bone so that they can obtain the tissue sample to send to pathology, then they replace the bone and stitch up the incision.  I am scheduled to go in for surgery this Monday.  The recovery will take about a week, so I will be off work.

The scarier thing is, the doctor basically said that this inflammation could be 2 things: 1. inflammation or 2. cancer (probably lymphoma, non-Hodgekins).  Though he didn't come out and say he thinks I have cancer, based on his exam, his hunch was that most likely it is NOT inflammation, because I wasn't experiencing the other symptoms more commonly associated with inflammation (pain, double vision etc.)  But he said not to jump the gun yet.  Let's see what the tissue sample reveals.  Needless to say I am pretty much completely terrified, but trying to think positive.  It sounds like if it is cancer, it is treatable.  Anyway, I will just wait and see what the diagnosis is. This is all very scary and surreal.  

The good news is, I am blessed with an unbelievably wonderful network of support through my amazing husband and family, friends and colleagues.  I know I will get through this, but I really, truly believe in the power of prayer and positive thinking, and this is why I am writing to you, my dear friends and family.  I just want to request your prayers and good thoughts for a successful procedure, a quick recovery, and a favorable result of the biopsy.  If it is indeed cancer, than please pray for me to get through this as best as I possibly can.  I am not trying to be secretive about any of this (though I'm not quite sure yet what to tell my students and their families), but like I said, I think there is great power in numbers, and I am so incredibly thankful to have all the support and well wishes that I can get.