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. :)

Day in the life of a chemo patient between treatments...

Go to bed feeling happy after a nice dinner out with in-laws, feeling grateful that your mother in law was able to help out so much with daughter before flying back home.  Feeling good emotionally and physically, don't even need a pill to fall asleep.

Wake up in a frenzy, your husband has already showered, but seems to be running late and baby overslept too.  Realize that your left arm is asleep, again.  Worry that the neuropathy is getting worse, remind yourself that it should go away after treatment is done.  Realize that your throat BURNS and start coughing.  Worry that all the work your family put in the last couple of weeks to keep you safe from the cold that was going around didn't work.  Don't mention any of these worries to your husband because he's late already.

Get out of bed, thinking you will get hugs and kisses from daughter, but instead get same morning crankiness you usually experience yourself.  Fast forward through breakfast, making of the latte-to-go, and giving lots of goodbye kisses.  Realize you're alone in the house and should probably eat even though food tastes like cardboard.  After breakfast, get back in bed because you do not want to get sick and sleep is the best medicine - and husband said to take it easy today.  Get woken up 2 minutes later by alarm you set up for antibiotics.  Get out of bed, take meds, get back in bed.  Remember you also need to take the new medicine for the infection in your mouth.  Start coughing and get burning sensation in mouth again.  Experience relief because your sore throat this morning was from medication, not because you're getting a cold! By this time you're too awake, so go out to living room to watch some TV and relax.  Remember that you got an email coupon for 100 free prints on shutterfly, so pick all those out and order them.

After a couple of food TV shows, decide you need to get some stuff done.  Unload and reload dishwasher, fold some laundry, pay some bills, cancel that service, etc.   Decide it's time to try to do whatever you can to spice up food for lunch.  Stand in front of stovetop for 30 minutes adding sauces, spices, drops of lemon, and whatever else you can find in the hopes that the sauce will taste like something.  Finally decide that you can get a hint of the taste, and serve yourself.  Sit down to eat, only to be disappointed because the chicken still has the very grainy texture and mostly still tastes like cardboard.

Determined to be productive, you shower, and change.  Decide not to wear makeup because you're only going to run an errand and you want to get back before husband and daughter get home.  The number one priority is to buy a replacement bulb for the fan light that stopped working last night so you can have some light in your room.  While at Home Depot, decide to buy a couple of supplies your husband had mentioned needing before he can install the shelves and frames you want in the playroom.   Feeling accomplished, and armed with all the "cooking for chemo" articles you read last night, decide to go to grocery store and get food for today.  Skip the cart and grab a basket, because you plan on getting very few things.  Start in the produce area - pick garlic, tomatoes, bananas.   Be approached by a gentleman with a backpack and headphones while selecting bell peppers.  "Are you doing that chemo thing?"  When you reply yes, have him tell you that 1) the hair will grow back if you stop chemo, and 2) if you give yourself to the Lord you will be healed, or will start healing, or something.  The man seems oddly aggressive, so thank him and walk away as fast as you can.  Oddly shaken by the encounter, remind yourself that when you decide to be authentic and show your baldness, and ever diminishing eyebrows, you open yourself up for comments like that.  Have a couple of cell phone conversations with your sister, but line keeps getting cut off.  Continue shopping, realize basket is getting heavy and your sister in law would be yelling at you for not conserving energy.  Leave basket on floor after telling a store employee you will be right back, and get a cart.  Realize as you are walking back with cart that you should have asked said store employee if they wouldn't mind getting you a cart.  Proceed to checkout, have nice checkout lady ask (almost in a whisper) if you are "fighting the good fight" and give some encouraging words.

Get home, look up recipe for creamy garlic mashed potatoes that you are hoping to make so potently flavorful that you already have a Plan B side of rice for your daughter.   Realize that after all that, you forgot to get potatoes because of the supermarket guy.  Decide on another menu for dinner, and start cooking.  Make a quick sangria with the recipe your mother in law mentioned the other day, because you can.  Hugs and kisses to husband and daughter when they get home.  When friend mentions she can return your cat since she was watching him for this round, invite her over for dinner too.  Enjoy what others mentioned was a delicious meal, feeling grateful that while you're not enjoying your food, at least you are not hungry.  Decide to blog today because you realize it has been a bit and people might be wanting to check in on you.  Ponder the writing style for a minute, and realize it is because today felt like many tiny moments.  Plan to respond to some emails and make some phone calls tomorrow.  Go to bed. :)

Day 4 of round 4

I just realized the last post hand published.  I'm doing good, but having more nausea symptoms than before. The side effects can be cumulative so this isn't unexpected.  However, I probably won't be on blogger or Facebook (or email or texting) till next week.

Thanks for your messages and for checking in!!!

Round 4 started today!!!

Well, I'm happy to report that I've had some pretty good days!  I've been able to enjoy some "me" time - and decided to spend a couple of minutes by the beach enjoying the Sun and the calming ocean. I promise I had sunscreen and the hat on most of the time, but wanted a good pic of the bald head, my smile, and the beach! ;)

My inlaws are in town, to help my sister in law get settled (she started college today, I can't believe it!!!!), so we've been able to hang out.  My daughter has been having a blast, and I even got to take her to a bounce house during week 2 (can you see her running around?)

Unfortunately, we've also had a cold going around, and even the little one got it.  She had a fever yesterday, so I got to sport this awesome mask for a couple hours last night... :(. Not the most fun, especially because my 3rd weekend is the time to have fun and enjoy myself before going to the next round.  The good news is that we've had plenty of help, and that so far my counts seem to be unaffected!

I'll probably go on another computer hiatus to avoid the nausea again, but wanted to give an update.  By all accounts we're doing well, my main complaint is that while food has stopped tasting like vinegar (yay!!), it still doesn't exactly taste like anything.  That is disappointing, but not even a problem in the grand scheme of things.  My oncologist said if the taste buds for return till chemo is gone, he'll personally instruct  my husband to get me high quality dark chocolate to enjoy, which means he understands my concerns very well!  Until next time, hugs to you all - thanks for all your emails, comments, text messages, and Facebook messages! :)

It takes a village...

I've written a little bit about things that friends or family have done for us to help us out.  However, I've tried not to share a lot, because I feel that others should have a right to their own internet privacy (and because I keep meaning to take pictures of certain things and forget - chemo brain!).  Having said that, I want to share a story with you.  When I first got diagnosed, not only did I have to deal with my own feelings (anger, frustration, pain, fear) but also those of the people that loved me.  It is kind of funny to think about now, but I did a LOT of reassuring others during the first couple of days after my diagnosis.  In some ways, re-telling the details of what was going on or could happen, the prognosis percentages, and the fact that I was 100% ready to fight - helped me gather the courage I needed.

I did some funny things prior to chemo, like buying some nice earrings because I was determined that I would have cute earrings that I could later give to my daughter and let her know her Mama beat cancer wearing them.  I bought a crazy bright hot pink lipstick (which you've all seen), because I wanted to be BOLD if I had to be bald (and eyeliner and eyebrow liner which I was told might come in handy as the eyelashes and brows fell off).  I know many around me were trying to figure out with ways to cope themselves - not just with what I was going through, but with the reminder that life is precious, life is short, and life can throw one heck of a curveball at you when you least expect it.

As I was preparing for my battle, a good friend of mine, Becca, felt the need to do something herself - and she decided to start training for her first marathon while raising money for the Leukemia and Lymphoma Society (LLS).  LLS research is responsible for one of the game-changing chemo drugs that I am on (Rituxan), and they continue to invest resources for blood cancer research.  Training for a marathon is no small feat, and we've shared comments back on forth on how we're both exhausted!  The Puerto Rico chapter of LLS doesn't have any local marathons, so she will be flying to Miami for the run.  Her fundraising page is #JoelleStrong Team Fundraising page (it is a little embarrassing to read all the nice things she says about me), and she has been documenting her training in her own blog if you'd like to take a look.  I am humbled by what she is doing, and I hope to join in on cancer research fundraising efforts once I'm done with all my treatment and recovery!