PET scan on Friday (tomorrow!)

This was supposed to post on Dec 26, 2013, guess that explains why I hadn't received any comments!
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I have another PET scan tomorrow, this one should show that I am still in remission, and hopefully that the mass is smaller than last time.

In other news, my hair keeps growing!  I still have some balder patches, but pretty soon it will look like a pixie and not like I was sick.

  I don't expect to get the scan results until we meet with the oncologist on January 2nd, so don't worry if you don't hear from me till then.  I should be enjoying some downtime with my husband and daughter. :)

Thankful - belated thanksgiving post

The post below the hatched line was supposed to post on Thanksgiving Day, but I'm reposting today....

Sorry I have been MIA, we just have a lot going on.  I know that there are many of you that like to check in and kept me in your thoughts and prayers throughout treatment.  I don't know if I ever told you how powerful I think that support was, and continues to be.  Today I respectfully ask that you keep my cousin Coral in your prayers and thoughts.  She is an amazing young woman who is battling for her life after a horrible car accident last Friday. While I am confident she will pull through, I am praying for her more than I did for myself - I now understand how difficult it was for many of you to stand by while I faced my battle.  

Please join me in praying for Coral's full recovery, for wisdom for her medical team so they can make good choices, and for her family to find positives in the little victories she faces until she is well. Thank you.

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I am so thankful for good health right now!  I am thankful for doctors, nurses, pharmacists, and all those that go into the healthcare fields to help others.  I am thankful for a good job that allows me to have great health insurance and covered the brunt of the financial burden that cancer brings.  I am thankful for the brilliant minds that choose to dedicate their time to find cures and better therapies for cancer.  The researcher's refusal to stick with "good enough" and continue to find better alternatives for patients is what has given me the opportunity to kick cancer into remission without having to get radiation to my heart area, and hence not having to deal with negative long term side effects.

I am grateful to live in an age where I can connect with others with my disease online and learn from them, where I can blog and connect with family and friends near and far. I'm so very appreciative of every phone call, text, email, greeting card, flower, and small token of appreciation my family has received to help us get through a difficult time.

I am grateful that my daughter is too young to remember how sick her mother looked and felt, and to not have had to worry about me not being there for her.  I am thankful for grandparents that were able to help out during our difficult times, of siblings who were able to fly out, or call, or video chat and let us know they were supporting us.  I am grateful for my husband, who knew when to push me to do more and when to remind me to relax - and who had the unwavering faith that everything would be ok.

Most of all I am grateful to be writing this while knowing that I am slowly healing and getting better, and that there is a long future ahead of me.

We had a great thanksgiving week, and I am grateful we were able to interact with so many friends and family!  I hope you all got to take a bit of time to reflect on what you are thankful for, and enjoy some good times!

While I feel a little vain even writing it, I am also thankful that my hair is starting to grow again!!!  The eyebrows are closer to gray hair, but they are getting fuller, I have super tiny eyelashes, and there's a shadow on my head that is actually hair!  I will keep you informed of the progress there!!

Ever Need Some Motivation?

Wow. it has been a while since I posted.  I guess I don't feel like I have much to report.  I'm still feeling the side effects I mentioned last time, although I might be feeling a little closer to myself each day.  I think I've mentioned a few times that during this process social media has helped me a lot, finding people with your same diagnosis that have beat your cancer is awesome.  It is especially great if you can share the experience with someone else.  The week I had my first DA R-EPOCH treatment, a friend I met through facebook was starting hers in the UK.  During the last 6 months, we've discussed our complaints, hopes, dreams, and vented a little.  She is recovering well, and is happy to report that her hair (eyebrows, eyelashes, hair!) has started growing back in. And... today she goes in for her let's-make-sure-cancer-is-still-gone end of treatment PET scan.  I have mine scheduled for December 27th, and I am very excited about it.  However, as the day gets closer, I am sure I will experience some of the scanxiety my friend is going through.  Because of our chat yesterday, I was thinking about what I do to motivate myself to get through the tough days - and I wanted to share that with you guys...

My dad introduced me to Madonna's music when I was little, and I still love the songs "Lucky Star" and "Material Girl."  Growing up I also loved Alanis Morissette, Shakira, and countless other strong female anthem-type songs.  A song that I have liked since it first came out is the song Strong by Kelly Clarkson.  My husband can tell you how many times he heard me singing "What doesn't kill you makes you stronger, stand a little taller, doesn't mean I'm lonely when I'm alone..." on days when I was struggling.   When I first started chemo, I remembered this video and I watched it many times during my treatment.If these kids were able to go through the cancer treatments with a smile, who was I to complain about my own struggles?  Here's a music video of the Seattle Children's Hospital Oncology ward to Kelly Clarkson's song Stronger:


Lately, a new song has popped up that I have also been singing incessantly, it is Katy Perry's ROAR - and I am also sharing my favorite video rendition of that one.



In case you are wondering, yes, my almost two year old daughter knows about these songs, and she likes to ROAR to Katy Perry's song. :)  Hope these help you on days where you might need some motivation.

Halloween! (End of chemo week 4)

Hello friends!

I'm still really tired and in recovery, but I've been able to go out and have some fun.  For anyone else in recovery, the key to enjoying a party you've been looking forward to, or an outing you have been planning on - is to save your energy!  For example, before a Halloween party at my friends' house - that I really didn't want to miss, I made sure to take a nap the two days before and ended up having to take it easy for a couple of days after.  It was worth it to spend a couple of hours celebrating with friends, and seeing the kids playing together.  I'm going to try to keep track of the symptoms below, at least to track how they progress until I feel like myself again.  My husband bought champagne when I had the chemo port removed, but we're waiting to open the bottles until I feel good good, not just a little better.  However, I think I'm doing better every day, so I have a lot to look forward to!

Symptoms - 3 weeks after chemo

• Neuropathy - The numbness in my arms and legs is getting worse.  My hands, wrists, and arms bother me when driving (I keep changing which arm I use as the dominant one on the wheel, which helps).  Arms are also falling asleep more (when reading, when I wake up, etc).  All the info I had read before on neuropathy and chemo said the pain gets worse before getting better, so I'm hoping this is good news and the pain comes from the nerves recovering.
• Aches & Pains / Soreness - I'm having some aches on my joints, they feel like Neulasta pain although I assumed that by now the effects would be gone.  We'll keep an eye on it.
• Mouth Pain - My gums, lips, and generally all my mouth hurt a lot last week and the beginning of this week.  I used the oncology wash to alleviate the pain, but by now it is gone!
• Taste - Taste is still not back.  However, it seems to get better every day.  Sweets (like chocolate ice cream) don't taste like they should, but I can at least taste sweetness.  Tomato based sauces (like ketchup, marinara sauce, salsa) are still the closest I can get to enjoying the taste of something - so I eat those a lot.  Finally, bread and pasta don't taste like vinegar anymore.
• Nausea / Motion Sickness - The nausea has gotten better, but still gets triggered by spending a lot of time on the laptop, so I'm being careful.  I seem to still get motion sickness from the car if I try to sit in the back seat.  I think it will be a long time before I try to get on a roller coaster - I've been getting dizzy just by dancing with my little one!

You might be wondering what was my costume?  Well, I decided to take advantage of the Ariel wig I had shown off earlier (Link:Women's Anime Wave Costume Play Wig (Red) ).  My daughter is obsessed with The Little Mermaid, so she dressed as Ariel the mermaid, and I was the Ariel with legs and a blue dress. A little makeup later, and you can't even tell I was sick!  I've been told I should consider this hair-color when my hair finally grows back, what do you think? :)

Done with Chemo!!! (End of week 2)

Well, I think it is time I share the good news of being done with chemo!!  My last day of actually receiving chemotherapy medicine was October 18, 2013.  Technically, I will not be done with the treatment until I see the doctor at the end of week 3, but since the process of healing has finally started we're treating it as done!

Below is  a picture with some of the nurses that treated me at the Westwood UCLA Hematology Oncology clinic.  These people are amazing - so sweet and helpful (although they scold patients when they need to!)

These pictures were taken the Friday that I had my port removed for the last time.  I was NOT sad to see it go!  My energy levels were pretty good at the time, and we brought Halloween-decorated cookies  as a thank you for the staff.  The weekend after the 6th round of chemo was probably the roughest, but  we were still in a celebratory mood.   The next Monday, we had a full car driving up to UCLA (Mom, husband, daughter, and I) since we decided to bring my daughter so that the nurses that had been taking such good care of us and asking about my daughter all the time could meet her.  She did great and of course put on a show for the staff (they would individually go out to the waiting area and say hi to her since the clinic is always so busy with patients).  These were good days, and I was very happy to share our excitement with them.

Since then, I've been at home recovering with low energy levels. Around the middle of week 2, I felt well enough to take over my daughter's morning routine, as long as I was careful about conserving energy.  Basically, I would be able to get her into high chair, have breakfast with her, and change her into a clean diaper and day clothes - but would then need to sit on couch with her for a bit (reading or watching a show) before I caught my breath and felt well enough to pick her up and get her in carseat before driving her to daycare.  Then after parking, taking her out of the car, carrying her up steps to daycare, I would need to sit down or just wait a few minutes before attempting the drive back.  However, I find it well worth it so that I can spend time with her and have fun in the mornings, I just drive home and take it easy (or take a nap) afterwards!

I've been getting a lot of questions about what the next steps are.  The good news is that my oncologist is still confident that I won't need radiation.  I have an appointment next Friday to have all my blood counts checked to make sure that my body is recovering as it is supposed to, and we will also discuss more long term plans then.  For now, it sounds like I won't have another PET scan (to confirm cancer is gone) until 3 to 6 months from now.  We will be discussing when to take out my port-a-cath, which we might be doing in December - which was a shock to me, I expected I might need to keep the port in for 1 or 2 years.  I am expecting to go back to work mid December, although it is too early to make concrete plans.  In the next couple of days, I expect the residual bone pain to go away.  In the next couple of weeks, I hope that the mouth sores and mouth pain will go away, that my taste buds will start to come back, and possibly to start seeing some hair growth!  While the neuropathy (numbness) in my right hand has started to be alleviated, it might take months to a year to all go away.  Finally, the hazy brain that has been driving me crazy (I rely on my good memory too much to lose it!) will take an indeterminate time to go away.  My husband and work friends like to remind me that I worried about my brain not working well when I was pregnant and returned to work after having a baby - and that it did come back just fine - so I just have to give that time and try to be patient.  If anyone is wondering, "chemo brain" feels 10 times worse than "pregnancy brain" in terms of forgetfulness!!

Ok, I think that is a long enough blog post, even if I have been absent for a while (and I'm starting to feel nauseus from the computer usage - something else I hope will go away soon!)  There's some chemo-related tips I want to post later, I keep a running things of things I wish I had known about or better understood when I was first starting out that I want to write down. 

Thank you again for all your support.  I feel truly lucky and blessed to be able to write about the end of my chemo treatment and how I am cancer-free. :)

Greetings from chemo chair (final round, day 4!)

The motion sickness is tougher this round, as expected, but the IV anti nausea meds they give me at infusion center offer some relief, enough to catch up on some emails, Facebook, and write a quick blog entry!

We had Pei Wei for dinner 2 nights ago, and check out the awesome fortune I got! :)

We are counting down the days till this chemo round (and the rough days after) are DONE!  I'm excited to plan my last day at the infusion center, and bring some thank you notes and treats for the doctor and nurses.  I'm also looking forward to bringing my daughter over to say hi (during treatment I've gotten to talk to the nurses a lot, and they have been wanting to meet her)!

Can't wait to share the good news with all of you too!

So, what's supposed to happen?

Last day of chemo: Friday

Last Hell-ish weekend

Last day of treatment: Monday

We probably won't be celebrating much till Monday/Tuesday to give me time to feel better!!!

Final round starts tomorrow!!!

Well, I just realized my last post never uploaded.  That goes to show how much less attention and time I'm giving to the computer!  Good news is I've been feeing pretty good. As I've mentioned, each round is tougher on both mind and body.  I haven't gotten to do as much fun stuff in between rounds this time, but that's ok because the end of treatment is near!

I hadn't posted this picture from round 5, it's from the chemo chair - they had donated hats that they give away to patients, and I really appreciated this one on a particularly cold morning at the infusion center.

Round 6, my final chemo round, starts tomorrow and I am both very excited to get it DONE - but also very apprehensive about the 2 awful weeks ahead of me.  I'll keep thinking about the end goal, that's the important part.  It's also pretty exciting and terrifying to think that soon I'll be done with chemo and can start working on getting better.  I'm looking forward to having my taste buds back, the prednisone swelling to go down, the numbness in my hands and feet to go away, the hair to grow back, the night sweats to go away...

I might post during the week, but the countdown to being done with chemo is about ready to start!  Reminder that I don't consider being "done" with a round until I'm past the miserable days - that means day 8 or 9 after beginning of chemo - as nice as it is to be unplugged from the pump, it takes days to feel like myself again!

I went out to lunch with some good friends recently, and found this decorative block at a post-food stroll tnrough the bookstore.  I loved the message and wanted to share...

Thank you all again for your continued support, can't wait to let you done when I'm done.  Until then, I'll continue trying to learn "to dance in the rain". :)

I'm finally calling round 5 done

Well, it seems each chemo round is tougher to get over.  I imagine that's why everyone says the effects are cummulative, it is just odd when you kind of know what to expect and then it changes.  The good news is that I'm feeling good!  The bad news is that my list of symptoms and side effects keeps growing!

It feels like I'm writing this post later than I should, because I've now started feeling like myself for a whole 24 hours.  Part of my problem with the chemo side effects is that while I feel sick, I keep thinking of things I should do, or would like to do, or will do as soon as I feel better.  When I finally feel better, I do too much too quickly and get chastised by my husband for using up my energy.

I'll do a quick catchup of what's been going on.  I have now lost all eyebrows and eyelashes, but have thankfully mastered the art of faking them with makeup (or so I tell myself!).  It seems like the taste buds went away faster this time, which means almost everything once again tastes like vinegar or cardboard.

On Monday I got the neulasta shot, and felt pretty lousy with stomach issues and nausea until Tuesday afternoon, when I felt well enough to spend some time outside with the little one, my mom and husband.  We got to play with chalk in the front path, and it was a lot of fun (especially since all I had to do was sit and draw!). Last night was the "lost" night I generally have where I'm too wound up to sleep, and today I left the house for a late lunch and errands with my Mom - and I drove!

I'm feeling adventurous enough to make some plans for the weekend.  The priority between now and next chemo is to have some fun and stay healthy so that I can finally be done with the treatment and start recovery!

Round 5 starts tomorrow!

Halfway through this week, I realized that my cough was finally FINALLY getting better, and how bad I had actually felt the week I was in the hospital.  I also had to get over the disappointment of having to get hospitalized - I thought I had been doing so well, following the rules and being careful!  I even initially started considering that I should do a little less, stay at home more, just lay low till we're done.  

Thankfully, I have doctors who understand that part of the reason I need to "do fun things" is for my emotional health - they reminded me that I've gotten this far, that I should continue what I've been doing.  So... I will be a little more cautious, but probably just a little...

In other news, as I finally started feeling better as the coughing fits subsided, it became apparent that my taste was coming back!!!! It seems my taste buds need about 3 weeks after treatment to start working again!! This was a relief, I had read accounts of people waiting about 6 months after chemo before anything started to taste good...

Needless to say, I've been going through some of my favorite meals (my Mom's arroz con pollo, my homemade mallorcas, tapas from Spanish restaurant, kabobs from Lebanese place, and CHOCOLATE!!!!).

I went out with my in-town-for-a-wedding pregnant friend.  I was careful, and walked into and out of The Cheesecake Factory wearing a mask.  It was worth it for the visit, and for the deliciousness we got to enjoy.  I wondered whether to post a picture of myself with food, mostly because my friend Kevin has taken (and posted) TOO many pictures of me mid-bite which is never flattering.  However, apparently the look of sheer hoy on my face was awesome.  Here goes, the first time I enjoyed a dessert in months!

I had the Godiva cheesecake... :)

Whew, what a week! (In and Out of Hospital)

Whew, what a week!

Last Saturday we spent the afternoon at a 2 year old's birthday party, and my daughter had SO much fun playing in the sandbox with her friends.  I had a minor headache, and some cough that I attributed to the mouth wash/medicine I had taken that week.

Well, fast forward to Sunday morning - I had a bad sounding cough and just didn't feel right.  I felt like I was getting sick, so I tried to take it easy and was checking my temperature every couple of hours, just in case.  Around 5pm I had to cancel on a shopping trip with friends, and a couple of minutes later, I checked my temp and found that it was 100.6deg - fever!  My oncologist and all the oncology nurses have constantly reminded us that if I ever had a fever we had to rush to the ER because chemo patients are immuno suppresed and even a minor cold can be dangerous for us.

We put shoes on, grabbed the diaper bag and headed out the door.  On the way there, I called the on-call number for onco office, and doc said since it was a low fever, we could afford to wait the 45 minutes while driving to UCLA, so off we went.  We also called my father in law and asked him to also drive North so he could pick up my daughter (we really didn't want her hanging out in the Emergency Room, especially because last time we spent hours in a hallway!)

Well, it was very much like a scene in a movie - I walked up to the triage nurses at the ER and said I was a chemo patient with a fever (by then it had reached 100.9deg), and they made things happen!  The waiting area was almost empty, but within minutes they were checking my vitals, and then moved me to a bed.  It took about another 15 minutes and they got us into a room in the ER.  They started me on fluids and antibiotics pretty much right away, and they also took blood samples from my arm, and from my port a cath.  It seems one of the first things they worry about is that my port a cath might be infected, so they treat it as suspect and give me the medicine through the vein in the arm...  During this craziness a very sympathetic young female doctor walked over and told me that I was being admitted - and that pretty much if I ever walk into ER again while still wearing the port they will admit me for at least 24 hours.  So, I figured one night might not be too bad and we already had the baby covered.

I won't bore you with all the details, but at 10:30ish that night I was finally wheeled into a room in the hospital's oncology ward.  During my time in the hospital, I initially got worse (fever hit 101.3deg and resting heart rate was in the 120s - which is pretty high).  My throat hurt so much it hurt to talk, and the nausea/motion sickness made it very difficult to even read/respond to text messages.  So, I took lots of naps and watched a lot of bad TV.  By Monday the doctors were saying it might take up to 7 days for them to release me, so we asked my Mom to fly out and help too.  There's only so much time my husband can take off from work...  The suspected diagnosis was pneumonia, even though they weren't able to prove it.  Actually, none of the cultures they took came back positive, so doctors suspect it might have just been a virus that got me.  Unsurprisingly, my daughter is sick too - no way to know whether I got her sick or vice versa...

Fast forward to Wednesday afternoon when the doctors were starting to say I might go home soon, and they finally released me wednesday evening.  Got to hang out at home on Thursday, 2 doctor appointments on Friday, and now home trying to take it easy so I can kick whatever is making me sick!  When we saw the oncologist on Friday, he decided that we should delay chemo by a week.  He says I've made incredible process and have tolerated chemo well, he thinks it would be a mistake to do chemo while I'm feeling so under the weather already.  My husband and I had very mixed feelings about this, because we both can't wait to be DONE.  My Mom had *just* been telling me earlier in the day how we would be done in 4 weeks (although I always count the next week since it takes that long to feel like myself).  I had *just* added chemo week 6 to the calendar, which I had been hesitant to do before because I didn't want to be disappointed.  Oh well, if this what I'm complaining about, then I am one lucky girl.

So.... In approximately 6 weeks I hope to be done with this treatment!  Between now and then, I have to do a better job of steering clear of sickness.  Don't worry, I will still have to find fun things for us to do, it is part of my emotional therapy to go out and enjoy life. :)