Monday, October 25, 2010

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.




Monday, October 18, 2010

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.

Friday, October 15, 2010

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.

Monday, October 11, 2010

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.