Thursday, December 26, 2013

PET scan on Friday (tomorrow!)

This was supposed to post on Dec 26, 2013, guess that explains why I hadn't received any comments!
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. :)

Wednesday, December 18, 2013

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.

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!!

Thursday, November 21, 2013

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.

Thursday, November 7, 2013

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? :)

Sunday, October 27, 2013

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. :)

Thursday, October 17, 2013

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!!!

Sunday, October 13, 2013

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!

Sunday, September 22, 2013

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... :)

Saturday, September 14, 2013

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. :)

Wednesday, September 4, 2013

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. :)

Thursday, August 29, 2013

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! :)

Saturday, August 17, 2013

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!

Wednesday, August 14, 2013

Emerging from hibernation...

Well, its officially wednesday of week 2, and I feel good!  The nausea finally started subsiding yesterday, and today I feel like myself again.  I can now log onto the computer and not feel like the world is spinning!!!  We had read that the third round of chemo can be rougher for people, and therefore were dreading it a little.  I think it was rougher in terms of the nausea and the tiredness, but it seemed to take about as long to get back to normal, so that's good news.  The main complaint I have right now is that all foods taste like vinegar, which is no fun.

We saw the doc on Monday, and it was great to hear him once again say that I am in remission!  We have to continue going weekly to monitor my blood counts, and the only number that is looking a little low is hemoglobin.  He stated that in this case, iron supplements and iron-rich foods wouldn't help bring the numbers back up, that we just need to monitor during treatment (Depending on how the counts go, they might adjust my medicine dose).

I feel awesome today, almost too good because it was tough to take it easy.  I am sure my Mom will be shocked to hear this, but I had so much energy I did laundry, and also decided to declutter - I have a box of books and a box of toys to donate now.  I am looking forward to a week and a half of feeling like myself before round 4. :)

Monday, August 5, 2013

Round 3 has started!

Nausea has already started (it's a sad day when even chocolate milk doesn't taste good), but it is manageable.  I had to take it easy today and will do the same tomorrow.

However, I had an amazing weekend.  It started on Thursday, with a Duffy boat (small boat with sun cover, sits 12) lunch ride with some friends/coworkers.  It was great to see them, and a very relaxing ride.  Reminded me how much I miss some of the people I work with, will need to plan some more lunches so I can get to say hi to others!

As a bak story, my daughter had been asking to go to disney every morning for about a week, and I was feeling guilty about my energy levels and not being able to take her since chemo started.  It may sound like she's spoiled by getting to go all the time, but she also has to deal with her mama not being able to interact much with her every other 1.5weeks, so I think she, my husband and i deserve all the fun we can jam-pack into our one good weekend!

We went to Disney on Thursday evening for about 2 hours so that I could test out energy levels.  We only did one ride and dinner, but I was ok and our daughter was happy since she got to see some of the characters from afar.

Friday after my good prognosis announcement, we went to our good friend's house and had some mimosas (don't worry Mom, I didn't have a whole bottle like my sister suggested ;) ).  On Saturday, even though we were pretty tired, I was ecstatic to be able to join a group of fiends on their second cooking party, it was great to spend time with their kids too!

Are you guys getting tired just by reading this? Saturday after nap time, it was another Disney day - and on Sunday we went to aquarium with another set of friends.  Needless to say, I was exhausted by Sunday night, but as my husband says, it was good for the soul! We are already talking about fun things to do on next pre chemo weekend, although I'll have to schedule some more breaks... :)

I am still on a high from hearing good news about my prognosis, but I haven't forgotten how tough this disease can be. A friend of mine, who is battling cancer for the second time, just left the hospital after 12 days and 3 surgeries.  Please send positive thoughts for his speedy recovery, I know we will be!

Friday, August 2, 2013

Good news from 2nd PET scan

My oncologist called to give me the good news.  My PET scan results came back "as close to normal as possible"!  He also said that the mass in my chest had "shrunk significantly." I didn't get all the details because I was too excited to ask.  I'm sure ill get more info on Monday.  For now, doctor said to celebrate and enjoy the weekend, and that's exactly what we plan on doing. :)

Thanks again for all your support, prayers, acts of kindness - they have helped carry us through 1/3 of the way already!

Tuesday, July 30, 2013

2nd PET scan today!!

UPDATE: I have an appointment with the oncologist on Friday, and we will get the results then!  In the meantime, I'm trying to pack as much fun (and some resting too, still getting tired easily)  into the next couple of days before the next round.

The good news is that they didn't give me too much time to worry about it.  Second PET scan is this morning.  I haven't eaten in 7 hours so I'm already hungry and cranky, but I'm visualizing good results (no active cancer cells, that's what we want to hear).

Thanks for all your positive thoughts!

Tuesday, July 23, 2013

Round 2, Week 2, Day 2

Well, it's been awhile!  This second round of chemo was tough, but not awfully so.  In some ways, the first round was rougher because I was still dealing with the pain of the biopsy and recovering from the new port a cath procedure.  The doctor had warned us round 2 might be rougher, because most of my doses went up by 20%.  The main problem I had was nausea, like I had never experienced before.  I've already mentioned (and I had been warned) that nothing really tastes "right" while on chemo, partly because of the constant metallic taste in your mouth.    Well, on top of that constant bad taste, I felt like I had motion sickness for days.  I took the meds, and they helped enough that I didn't actually get sick, but it was a tough feeling.  It would also get worse when I dealt with my phone or computer, almost like when you try to read while in a moving car.  I basically gave up on electronic devices for a couple of days!

I also felt more tired, and the emotional component was a little tougher this time.  I had to try harder to stay focused on the positive side of things.  I kept feeling like I should do more - yet would get really tired just by trying to change my daughter's diaper, or picking up something from the floor.   I had to remind myself that if the toddler says she doesn't want to hug you, it's not that she doesn't love you.  This only lasted for a couple of days, but it is definitely part of getting off of the steroids.  Other symptoms?  The rapid heart rate I had last time is back, it seems to go on for a couple of days post chemo, just means I need to take it easy.  Oh, and the dreaded all-your-muscles-hurt symptoms still happened, but I was better able to manage them with Tylenol and sleep this time.

Yesterday we went back to UCLA for the famous white blood boosting shot.  They checked my blood count, and white blood cells and platelets are doing good so far.  We expect the neulasta to work it's magic like last time and keep me healthy.

It seems that somewhere between Monday and Tuesday of Week 2 post chemo is when I begin to feel like myself again.   Yesterday I was able to play with my daughter, and move around with her on the floor, play on the couch, etc.  It was great to hear her laugh with her Mama!  Today I was able to prep some of our dinner (I cut and sautéed veggies, yay), and unload and load the dishwasher!  I know those seem like little things, but they are major accomplishments to me. :)  Tomorrow I'll try the piano again, and maybe some walking around the neighborhood.

The good news is that next week I'm supposed to have another PET scan, to make sure that the treatment has made the cancer cells inactive.  I am looking forward to having fun the week and a half I have before the next round, and can't wait to see the results of that PET scan.  My husband and I are already dreaming of the vacation we're going to take when this is over. :)

Monday, July 15, 2013

Round 2 Day 1

Same as for first round, we went out to one of my favorite restaurants the night before chemo.  My father in law was nice enough to babysit, and then stay overnight so he could help with our daughter in the morning since we had to leave for infusion center before 6:30am.  The place I picked was Magic Lamp, a Lebanese restaurant in 2nd St.  The steak and chicken kabobs with garlic sauce were delicious as usual, and the company was great.  I even had a glass of wine!

On Monday morning we hurried out the door and I forgot the numbing cream that I was supposed to use on the port area to reduce pain when they access the port (it's called Emla cream, and it is available via prescription).  I figured since I was OK without it the first time it wasn't worth turning the car around!  Once we got to the infusion center, I was weighed, temperature, blood pressure, and heart rate were checked.  Next my port was accessed, it was flushed with saline solution to make sure there were no obstructions, then they drew blood.  After a couple of minutes, we got the printouts showing my white blood counts had gone down (but were still high in the normal range - thanks to neulasta again!), and my platelets went up from last time (yay, eating more meat probably helped that!). The doctor later explained that since I had I had tolerated the first round so well, we would follow the dose adjusting part of the protocol and most of the chemo drugs (except for vincristine and prednisone) would be raised in dose by 20% for this round.  We agreed with that, ready to kick this cancer's butt!

We started around 8am, and left about 2pm - after getting anti-nausea meds, Benadryl, and hen hours of Rituximap (which is just once per round so it's not in my pump).  Finally, the nurse installed the pump I'll get to carry for the next of the week, and we were sent on our way.  I got to nap for abut at home, then decided I felt well enough to go see my husband and friends play softball.  I'm unsure whether they won or lost the game, but my daughter had a great time playing with the other kids, as usual.  I got to sit on a comfy beach chair our good friends dragged to the park, and am very thankful of the other adults that did the running around after the kids (that's been my job before, and it is quite tiring!).  Afterwards I felt well enough to join the team at pizza, I think that's the first time since all this craziness started in May.  After getting home I got to catch up on all your awesome messages of support, thank you!

I just realized I didn't even mention that I'm almost completely bald now!  Here's another picture update, I'm hoping the eyebrows and lashes will stay for a bit longer.  If not, I'm ready to fake them with makeup thanks to a youtube site/blogger that my cousin told me about (it is written by a young woman with alopecia, if you're going through hairless too, chech out  I got a ton of compliments on FB already (thanks!!!!!) and it honestly feels better to go bald than to wear hats or anything else on my head right now. I do wear a hat if I'm outside and not in shade, since I'm trying to be very careful of the Sun exposure on my extra-sensitive chemo skin.

Tomorrow, and every day this week until Friday, we will need to get the empty pump bag changed out for a new one. On Friday they will take out the pump, and then I will have only 4 more rounds to go! :)

Sunday, July 14, 2013

Round 2 starts tomorrow!

Tomorrow chemo round 2 will start.  I'm a little nervous, because now I know what to expect!  I'm hoping I don't get the back spasms this time, and I'm hoping that by washing my teeth after every meal I can diminish or at least delay the gum/mouth pain.  I also know that taking naps during the day and saving up my energy for the things that matter is the way to go.  My husband reminded me that during the week of chemo I felt pretty good, that it is after the chemo ends (and really when coming off of the steroids) that a lot of the side effects begin.

Since I will be getting the pump again this week, and won't be able to take a proper shower till Friday, I took a long shower tonight.  Earlier today I was telling a friend how it's funny that I still wash my hair with shampoo - and it wasn't until I got out of the shower that I realized how amusing that was.  It turns out, my hair needs very little help to just fall off.  Posted below is what my hair looked like after the shower, it is obvious where I rubbed the shampoo on!

In terms of news, I'm feeling better!  Just in time for next round... I am looking forward to round 2, because getting through it will get us closer to the end goal of remission!

Wednesday, July 10, 2013

Bald Is Beautiful :)

We got good news on Monday!  The white blood cell boosting shot they gave me last week is working great, my counts quadrupled!  My platelet count has been slowly going down since chemo started, but it is still within limits so we will just continue to monitor.

I got distracted and didn't write on Monday because we got a piano keyboard!  It was perfect timing, because Tuesday was my first day on my own (my Mom flew back to her house some days ago and my husband was at work).  I napped a lot, and had a friend visit who taught be about piano chords, so it was a success.  Today I drove all by myself the 7 minutes to get to my local Starbucks and meet up with a friend.  It felt great to drive myself!

Really I'm just delaying what I wanted to write about...  Over the weekend I felt like my scalp was tingly.  My hair started falling off on Monday, but only a little bit.  We made sure to buy hair clippers at Target, to have them ready.  By Tuesday, it was obvious that it was falling off, but it wasn't too bad.  By this morning, I knew today was the day we would finally take the clippers to my hair.  It was obvious when hair was falling in my cereal without anything touching my head!  I mention using hair clippers instead of saying I will shave it off with a razor because chemo patients need to prevent cuts as much as possible.  This is what my hair looked like today, and also what my hand would look like if I so much as touched my scalp.

Armed with tips from my stylist friend (go against direction of hair growth, cut from bottom to top, go in all directions at the top to make sure it is even) - I sat in the patio while my husband took the hair off.  My daughter didn't love the process, I think she was scared the machine was hurting me and would kind of cry out.  We stopped a couple of times to reassure her that it was all ok.   At first she walked away from me with the short hair, but then I got hugs after she was able to touch the bald-ish head!

We started with a #4 cut, then went down in length.

I forgot to take a picture of the #2 cut, but here's the final result!  I thought I was going to have to hide it from my daughter, but she's doing just fine with it now.  I wore a hat when we went out to dinner with friends tonight, but ended up only wearing it into and out of the restaurant, I didn't feel self-conscious without the hat.  That's probably a credit to my awesome dinner companions, and to our waiter who thankfully didn't say anything about it.

So that is it!  I love not having to pick up hair from everywhere, and the hair follicles don't hurt now that the hair is so short.  I will need to remember to cover up even more when out in the Sun.  Don't I look like I'm ready to kick cancer's a$$?

Sunday, July 7, 2013

End of Round 1 Week 2...

Tomorrow is the beginning of the mythical Week 3 - the week when I am supposed to be feeling better,  when I am supposed to feel so well that I am feel ready for chemo Round 2!  I have lukewarm feelings about this.  While I feel well, and everyday I thank my lucky stars for  the minimal side effects I've actually had, this is still really difficult.  I have started to understand where all the "conserve your energy" advice came from!

Throughout the years, my perspective on being tired/fatigue has changed.   I've had to some shift work in my career, and I used to think that switching between night, evening, and day shift - especially when leaving work in the middle of the day to force myself to sleep and come in later - meant that I knew a bit about being mentally and physically exhausted.  That changed changed when I had my daughter, and I realized that the tiredness of not sleeping due to a crying child was worse than any I had ever experienced just by messing up my sleep cycle.  Well, chemo has taught me that there is an even higher level of tiredness, and it is very difficult to explain.  One minute I feel fine, and suddenly I feel as though a wave of fatigue washes over me - and I have to quit whatever I am doing.

For a while now, I have been telling myself that the next day would be the the day that I would feel "normal" and be able to do the 10 million things I keep thinking I want to do.  It has taken me a week to realize that I am now at a "one outing/visit per day" activity level.  I have still been able to see some friends and visiting family and enjoy myself - but I feel like I haven't been able to interact as much as I would like, and I definitely feel very tired quickly.

The good news is, that I am also learning to conserve my energy, and to do things to prevent/counteract the unpleasant side effects I've been having.  I've been getting crazy back spasms, worse at night, that have been making it really tough to sleep, and I still haven't recovered fully enough from my chest surgery to sleep lying down.  So, my husband did some research and got me this awesome recliner chair for people with back issues (yes, I am an old lady with a recliner, don't judge).  It is SOO comfortable, I might have to tell my friends to come over instead of trying to go out to restaurants - between the chair and the heating pad for the back, I can really relax!  And no worries, I'm not becoming a couch potato or staying in place for too long.  I'm trying to move around, stretch, walk or dance a little with my daughter when I can.

This is sounding like a depressing post, but every day we have good news - even if they are baby steps.  For example, I just realized my mouth doesn't hurt as much today - I don't need to avoid toast tomorrow morning!  I also came up with a great idea on how to spend my time.  I have been reading a lot, but not exactly literature that will make a better Joelle.   My mother-in-law had suggested, and I thought she was joking, that I figure out the things I had always wanted to do and schedule those into week 3.  It seemed eerily like a bucket list, but it got me thinking...

For some time, I have wished that I had learned to play an instrument when I was younger.  Not that I ever considered it growing up, but when I got to college I realized I had missed out on the art of reading and playing music.  I have been doing some research, and have decided I want to learn to play the piano.  I LOVE the sound of piano music, and the music I listen to when trying to relax (which I've been having to do a lot of when trying to lower my heart rate lately!).  I'm starting by learning to read sheet music. I have been amazed at all the good information to be found online (and the great teaching videos on youtube).  Three days ago I didn't know the symbol for treble or bass, now I'm practicing at reading notes quickly and determining where on the piano they would go (with an ipad app, of course).  I will be checking in with my musically inclined friends for suggestions on local music store - I want to get a compact piano keyboard that I will be able to plug into my computer while learning (there's not really space for a free-standing piano in my house).

In other news, I have a checkup with my oncologist tomorrow, mostly to check my blood counts and make sure they are within the normal/healthy range.  Hopefully, I will have good news to report!

Tuesday, July 2, 2013

Feeling better!

Technically, today is the 3rd day since my 1st round of chemo ended, and I'm finally feeling better!  We left the house to go to a doctor's appointment, but I had enough energy that we walked around for a little bit.  A good friend of mine mentioned I was looking sick in my last entry, so here's a picture from earlier today of my smiling self.  As you can see, I still have hair - but the doctor didn't really expect it to be around by next weekend, so we will see what happens.

My muscle pain and spasms have mostly subsided.  I still spent a lot of time napping and saving my energy, but I felt much more like my normal self (I have been able to apologize to my husband and Mom for my bitchy self, and they both pretended it wasn't that bad).  I felt well enough to pick up my daughter off the ground - which was a huge step forward!

A group of my friends got together this weekend and cooked a whole bunch of awesome frozen meals for us.  I didn't feel well enough to go visit them, but we did a video chat and it was great to see them and thank them.  We now have a freezer full of yummy foods that we can either thaw or cook in the slow cooker.  It was an awesome idea and we are humbled that they would do that for us.  We've already sampled the first chicken casserole, loved it, and had it for lunch the next day. :)

We're looking forward to the week, glad it is not filled with doctor's appointments!

Monday, July 1, 2013

Too tired to write... (Monday post round 1)

My plan is not to hide on bad days and boast about my energy on good days, the idea is to be honest about the process and take the time to put my thoughts down.

However, I have been too tired to think, too tired to write, and I have painful back spasms that are trying to get the best of me.  I'm saving up my energy for my husband, daughter, and Mom for now.  I will catch you all up when I'm feeling better, I promise.  

The good news is that I got the white blood boosting shot today, and that while my platelet count has gone down, the white blood counts and platelet counts are still within normal limits.  Yay!!! No need to put me in a bubble!

I'm busy fighting cancer, guess it's going to take a toll.  Thanks again for all your positive thoughts, prayers, and support - it is helping!


Saturday, June 29, 2013

Taking it easy today...

We were warned of possible bad nausea after the meds yesterday, so we kinda rushed home so I could eat and shower before the effects kicked in.  Folks, I've been doing sponge baths for the last week, and being able to wash my hair and just stand under the shower was glorious.  I got very lucky, and other than some stomach weirdness (closer to heartburn feeling), I am feeling ok!

For documenting purposes, here's a picture of me with the not so fun bandages.  Soooo glad to have those off for 2 weeks!

However, I have been tired.  I'm embarrassed to say I now snore, and sometimes so loudly I wake myself up!  The other foretold side effects that have started kicking in are the bad taste (or maybe changing taste buds is a better explanation).  I thought this was starting, but it wasn't till I had a hot chocolate this morning and realized it didn't really taste like chocolate that my suspicions were confirmed.  The nurses recommended I eat all that seems appetizing now while it tastes good, so I enjoyed some gelato we had in the fridge (and almost bit my husband's head off when he suggested I take it easy - he's still worried about the nausea they warned us about!).  I also had TWO mayorcas today!  We've been keeping some frozen in the fridge and it seemed like the perfect occasion!  Mayorcas are a Puerto Rican sweet bread, similar to Hawaiian sweet bread, traditionally eaten with powdered sugar on top.  They are amazing, and I've spent the better part of 6 months tweaking a bread machine recipe to get the right taste!

What's the second weird side effect?  My nails are changing - they seem a little stiffer, more brittle, and they seem to be getting darker.  Thankfully my Mom is willing to fix the mani/pedi my sister gave me so I can hide the claws!  Apparently they could turn brown, and i would prefer to not even see it!

Last thing I'll say is that I've been looking for ways to have fun with my daughter with all this craziness going on.  My husband is looking into getting her a small slide/swing set for the backyard.  And what do i do?  I got us Little Mermaid wigs!  She likes playing with the hats, and while she doesnt seem convinced by the wig, she seems to like it when I sing with it on. ;). I have been rocking my short hair, but I think I could get used to some fun colored wigs!

Friday, June 28, 2013

Round 1 of chemo, DONE!!!

Round 1 is done!!!! :)  Just 5 more to go.  I am feeling OK, just tired (as expected).  The good news is that they took off the pump today, so I am no longer attached to tubes and can shower like a normal person!  Needless to say, showering is amongst the priorities for tonight.  Plan is to eat, shower, and SLEEP!

I got to see my thoracic surgeon today (Dr Robert Cameron), who said my chest xray looked good, my incisions look good (although to me they are SCARY deep), and that basically he shouldn't ever have to see me again.  My husband and I thanked him profusely for his help, because he was a major player in expediting my diagnosis.  If anyone ever needs a thoracic surgeon, he's the guy to call (and send me an email anytime if you want all the details of why he's on our hero list).

The most common side effect of the drug I got today is nausea, so my oncologist sent me home with plenty of anti-nausea medication, just in case.  I am crossing my fingers that this will be another one of those symptoms that I will skip, or only mildly feel.

Thanks again for all your love and support!

Thursday, June 27, 2013

Round 1 Day 4

Quick note from my phone again! Round 1, Day 4 down! I'm feeling more tired today, so off to bed. I woke up this morning hyper again, but kind of lacking the energy "oomph" to go with the hyperness. To top it off, I was given Benadryl to counteract a slight allergy I'm developing to the glue from the pump/port bandage covers. Sleeeeeepy Joelle is what I feel like!

I had a lovely visit from my cousins today, it was great to see my daughter entertaining them! ... And I got to enjoy an In n Out burger for dinner, because I had been craving it for a week now and finally felt good enough to eat the fries and milkshake today. Don't get me wrong, we're trying to eat healthy here, but sometimes you have to eat what your brain wants. :)

Tomorrow they remove the pump, and I will have 2 weeks of being able to shower without having to worry about these bandages and cables! :)

Wednesday, June 26, 2013

Hair OFF Party!

First off, Round 1 Day 3 went pretty well.  I woke up hyper (again), and felt fine except for some nausea on the drive to LA (thank goodness for saltine crackers!).  I had a chest xray to make sure that everything looks good post 2nd biopsy operation (I will be seeing the thoracic surgeon on friday).  And then we spent about 2 hours at the infusion center while they gave me anti-nausea meds and swapped out the pump bag for a new one.

I was very anxious to get home, because today we were going to have visitors and I didn't want to be late!  My husband was laughing at me, because initially we had 3 hours to get home and it seemed like that would be plenty of time, but we lost 2 hours in traffic... Let's just say that lots of steroid meds and a little stress don't mix well, I was happy to get home with a little bit of time to spare.

I had read (and heard from awesome women who are cancer survivors) that the process of losing your hair can be tough.  So, I decided to adopt the awesome plan of having a mini party, and just take control and cut my hair before it starts falling off.  I had initially thought of going closer to GI Jane style, but thankfully I have an awesome friend and stylist who reminds me that he knows how to make my hair look better than I do.  :)

Our friends brought appetizers, dinner, and dessert - which is great because we needed the little time we had between driving down from hospital and the first guests arriving to just relax!  It was great to have them here, and I've also read it is good from their perspective - less weird when they see me without hair, etc.  My daughter fussed/cried a little at the beginning, but after telling her Mama was getting a haircut, that it was just a hairbrush, that it felt niiice, etc - she was fine.

I imagine you want to see some pictures...

First, I got to do the first cut!

In progress...

And here's the new haircut!  I love it already! :)

How to leave a comment on Joelle's blog?

I am so humbled by the fact that so many of you are stopping by to read my blog, especially our family friends that aren't as used to computers and the internet.  This quick post is for you, hope it helps! :)

I've gotten this question a bunch of times - so here's the easiest way to leave a comment on the blog (if you want to!).  I read all the comments, but haven't been doing a good job of responding, thanks for understanding. :)

1) Anyway, at the bottom of every post, there is a line that says something like:
"Posted by Joelle at this time     2 comments"

2) If you click on the comments link, you will get a white window for you to type in your information (and please sign it in some way so I will know it is you!  My cousin just used his initials the other day, it took me a minute, but I figured out who it was from :) )

3) Under the white text window, there is a "Comment as:" question with a pull-down menu (and it generally defaults to "Google Account").  This is the part that is confusing, so all you need to do, is click on the arrow, scroll down on the list and select "Anonymous".

4) Finally, click on the "Publish" button, and you're done!

PS - It is 5am here, I had a good night's rest but I'm hyper again this morning.  Going to try to take another nap before my daughter wakes up, we'll see how that works out for me!

Tuesday, June 25, 2013

Chemo Round 1, Day 2

Well, I got home and I'm feeling pretty good today.  I'm going to blog earlier and take advantage of this energy!

Today was supposed to be a long day (and it was, we were at the infusion center about 5 hours).  The medicine they gave me today has the potential of strong reactions, so the first thing they did was give me IV's with anti-nausea medicine, followed by Benadryl.  As an asthmatic with seasonal allergies, I'm fairly used to allergy meds - but this Benadryl was STRONG!  It made my eyes, nose, and throat all feel dry, uncomfortable, but not unmanageable.  Thankfully it also made me feel super sleepy.  Now that the day is over, my husband explained that they started the drip rate at a very slow rate, and then upped it every 30 minutes until I got to the right dose.  They start slowly because of the possible strong side effects - chills, itchiness, shakes.

I also started a high dose of prednisone (steroids) today.  I know this medicine well, as it has always been the stronger medicine when I have had issues with a bad cold and asthma.  I have complained that I have a love/hate relationship with it in the past, because I hate the side effects - hyper/jittery feeling, how my muscles all tense up and just hurt when I'm going off of it.  However, I am now learning to love it, it is what lowered the left arm/shoulder/back pain before the mass was reduced in size, it is what helped me get over the back muscle spasm pain last week, and now it is part of the chemo treatment that is helping me get rid of these cancer cells!  Now if they could just put a nice tasting coating on the pills I would be happy!

I can't remember if I mentioned this yesterday, but I will have to go in every day for 1 week (plus the following Monday) every 3 weeks - for 6 rounds of chemo.  The nurses keep apologizing to us for this being a difficult treatment, but we see it as a small price to pay for the life savings!  Besides, I have gotten to meet other patients with this lymphoma online and some end up having to stay in the hospital for the whole week. (If you are a patient, look for "Non-Hodgkins Lymphoma Primary Mediastinal Large B Cell Lymphoma" on facebook, it is great to connect with others going through the same treatment!)

I'll add a quick picture from today, I'm going to try to relax for a bit before my daughter gets home (need to bank my energies).  Thanks to all, two days down!

Monday, June 24, 2013

Chemo Day 1, post 1

Just waiting for this thing to start!  Last night I went to my favorite tapas restaurant (nope, didn't get to enjoy their lovely sangria this time) and my husband and I just enjoyed the live music and food.  It was a great way to pass the time because they are usually soooo slow!

Ooh, we've now been moved to the treatment room. It's a big room with lots of recliners. It is surprisingly calm and welcoming - obviously not spa-like, but nicer than a usual doctors office.  I'm going to pay attention now, will try another post from here later today.

Thanks for ALL your messages, I feel like today is the first day I get to fight back to cancer (vs letting things happen to me), and I feel like have an army of friends and family supporting me every step of the way!  Thank you!!!

Chemo pump info

All of a sudden I'm pretty tired, so I'm going to do a quick post before bed.  So far, I've had a little stomach uneasiness, and just a bad taste in my mouth (both things I was warned about.

I'm posting a couple of pictures so you can see what the "chemo at home" pump looks like.  It's attached to the port in my chest (the needle is uber covered in bandages, so best way to cover THAT up is with tshirts!).  And yes, I have to cover the bandage up because otherwise my daughter wants to see exactly what is going on...

On to the pump.  I will be carrying it in this stylish over-the-shoulder hospital issued bag.  It's not too heavy, and it's not too big.  My husband said it reminded him of a cassette player in terms of size.

The case has an easy-open Velcro flap for me to confirm that the pump is working.  It also makes low mechanical noise every couple of minutes, so it's easy to tell.

This is what the bag looks on the inside.  Small pump on the top side, and an IV like bag on the bottom, that holds enough meds for 24 hours. We initially thought I would be carrying enough liquid for 4 days at a time - but now understand that would require a backpack!!

That's my update for today.  I think the early morning blog post "just" went up (we had good signal for Facebook but not for Blogger at doctor's office).  I will try to add more info as to what happens during the treatments later.

And one more picture because I couldn't resist!  When I got home I had a package of cupcakes from friends, with the card "take 2 and call me in the morning".  Loved it, and they have already been sampled. :)

One day down!

Sunday, June 23, 2013

One day till chemo starts...

On saturday (a couple of hours ago), I was allowed to shower after the dressings from the port-a-cath insertion procedure were removed.  That means that I now have 4 different cuts with steri strips on me (I don't know how many stitches total), plus an awesome device that is going to preserve my veins when chemo starts.

Yesterday I had a rough pain day, with lower back muscle spams.  Based on some slight googling, it might be caused by the weird angle at which your body and shoulders are put for the port-a-cath procedure.  It probably wasn't helped by the fact that I've been listing towards the right side for days because the left side of my chest (and arm) hurt so much.  Come to think of it, I have probably been walking slightly lopsided for a couple of weeks now.  I was upset and frustrated, because I wanted to be in a good mood yesterday, I wanted to have some fun with my sister before she flew back home, I wanted to have a good weekend before starting chemo.  I am so so so glad that my family has been able to come out and visit.  They have been a lot of help keeping my toddler occupied, helping us around the house, and just generally providing a distraction from the cancer stuff.  However, I haven't been following the rules and, because I keep wanting to enjoy the moment, haven't been taking as much time to nap, recover, and just get my mind ready for next week.  I will do better next week, as I keep getting warned that I need "plenty of fluids, and lots of rest" all the time.

So, what do I want to tell you about?  I've gotten a lot of questions about "what's next?" - so here's the plan (as I think I understand it) for next week:
First off, the chemo treatment I will be undergoing is called DA-EPOCH-R, based on the drugnames they will be giving me (DA-EPOCH (dose-adjusted etoposide/vincristine/doxorubicin/bolus cyclophosphamide/prednisone) and rituximab (DA-EPOCH-R))
Monday - After doing some quick blood work to make sure I'm healthy enough for treatment, Rituximab will be administered to my port (I think the doc said this might be about a 5 hour day).  From  what we've read the first day is longer, because they need to monitor and make sure the very-powerful drugs aren't hurting my veins, that my body is tolerating things well, etc.

Tuesday - a needle will attach a small pump - looks like a pager - to my port (again, they will be nice to my veins!).  This port is attached to something that looks like a cool fanny pack, which will hold all the medicine, so that I can continue to receive chemo treatment while at home

Friday - go back to doc's office so that pump can be removed.  I think they give me another medicine then, but I'm not 100% sure
Next Monday - a shot to boost my white blood cells (neulasta) will be given.  I've had the priviledge of discussing this $7000 per shot medicine with my insurance, and have now been assured that they will cover it, and it will be administered at my doctor's office.  There was a brief period of hours yesterday where it seemed like I would need to make arrangements for the shot myself (although at a discount through a mail order pharmacy of BCBS's choosing), and that my husband might need to give it to me, but that was resolved.  Apparently this is very powerful, but has the unfortunate side effects of making bones hurt. a lot.   However, it seems to be an almost miracle drug in helping keep patients healthy and continuing with treatment, so I am happy to take it.

Next two weeks - time for Joelle's body and mind to recover so we can start again :)

I feel much better today, so much so, that we were able to go out for a bit and I pretended to be as normal as I've ever been for a little bit.  The tough part is that the prednisone that is helping me feel better, also has the fun side effect of making me anxious and keeping me up at night.  I might need to talk to doctors about better times for taking the pills, we'll see.

I've been enjoying my evening on non-sleep by reading the third book from The Hunger Games series, so at least I've been entertained!

I've been reading a lot of cancer survivor blogs (not webMDd or google, I know better than that!), and one woman wrote something that really struck with me.  She says she visualizes her cancer, and (I'm paraphrasing) says "Thank you for making me take a minute to stop, for reminding me of what really matters in life.  I have learned my lesson, now leave."  That has really resonated with me.  I've always been very driven, accused of being a nerd at school, and a workaholic with my career.  Even at first when I didn't feel well, I tried to balance what I thought was important at work, and at home, against my health concerns.  The first couple of days, when we were thinking I was going to need emergency open-chest surgery, I was still worried about getting back to work and helping them sort things out since I was going to be gone for such a long time...

In just a couple of weeks, this cancer has given me a different outlook on life.  If I could ask you to me one favor, just one little thing for me, it would be to make sure you schedule that annual check-up with your doctor, or have the dermatologist take a look at that mole you don't like, or just do the one medical thing you have been putting off because (honestly) you might be a little scared to find out it is a problem.  Do it for the people that love you, because they really really really want you to be around for many years to come.

Hmm, deep thoughts at 3am.  It's time to try to sleep again.  Good night, happy Sunday everyone!

Thursday, June 20, 2013

Portacath has been installed, Chemo starts on Monday

Well, today was another day of waking up early to drive up to UCLA for a procedure.  It was another day of fasting before said procedure, which means I was quite cranky on the way up there!  I was VERY nervous about going in for the port-a-cath insertion today, not because of the procedure itself (just installing a little medical device right under the skin that will connect to my veins).  

After getting upset that I had to provide another urine sample after not being able to eat or drink forever, I had a moment of brilliance.  I realized that maybe I am extra nice to all the health professionals I see to make up for times like today (when I am cranky and off pain meds and HUNGRY), or like friday after the 1-hour-turned-into-3-hour-procedure where I was apparently in so much pain I told the nurse I hit 20 on the 0 to 10 pain scale.  I cannot begin to explain how lucky I feel to be working with awesome doctors (and lucky to have such great friends to help us connect with such great doctors), to be seen by great nurses, techs, residents and students who are genuinely trying to help day in and day out.  

I spent a lot of time while waiting for today's procedure thinking how different it was than last Friday.  The Emergency Room at UCLA was straight out of a movie - although at times it felt like we were in an episode of Grey's Anatomy.  There were elderly patients, young patients, trauma victims coming in from speeding ambulances and helicopters - all being seen in the same area as we were.  We got to hang out in Hallway 2 (no rooms available when we first got there), and my husband and I just waited (me in the gurney, he had a little chair) and spent a lot of time watching and over-hearing the staff.  I think what impressed me the most was the young kids (yup, not me anymore) discussing the different crazy/urgent things happening and trying to see how they could be part of the action.  It takes a very special person to go into healthcare, and not a path I considered when I was thinking about careers.  I guess the fact that I find the tools fascinating (the CD with the CT scan where you can see the big mass looming over my heart and messing with my left lung just looks COOL) proves that I am an engineer at heart.

We also had a scary moment where they couldn't schedule me to start chemo on Monday because the doctor's office couldn't get pre-approval from my insurance.  My husband tried to deal with this while I was in surgery, but then of course my insurance company was trying to protect my privacy and couldn't discuss details with him.  I burst out in tears when I thought that after all I've been through this week, we might need to wait ANOTHER week before starting this fight.  Thankfully, I was able to groggily explain to the insurance guy that I knew who I was, and that I needed my husband to handle the details today.  So, my husband, my hero, saved the day, and got me pre-approved and all my appointments scheduled for next week while I was hanging out on the hospital bed trying to gather my thoughts.

Haha, this is my brain on pain meds, I need to be careful when I choose to write. :)  To make a long story short, we are home.  I am doing good, and now have this extra device installed.  My husband verified that it is all titanium (because that was a major concern of mine?!).  Now that baby is asleep, we are getting ready to watch a movie and have some normal time.   So, what's next?  The plan is to have a calm weekend, have lots of fun.  

Chemo starts on Monday, game on Cancer - we're coming for you!

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31 year old navigating life with husband and almost-2-years-old daughter :)