13 years later

It's 5/15 today. That date still fills me with a little bit of dread because it's a reminder of the day they found the huge mass in my chest. It's not like the past taunting me, but maybe a reminder to not take life for granted, to get movement in, to think about how I'm treating my body.

I started this blog for me, to make sense of all the emotions, and to let my friends and loved ones in if they wanted to know what was going on. I also started it for the strangers that search the web looking for hope after getting a diagnosis that turns their life upside down.

This is Joelle 2.0, 13 years later. I happily color my greys and get fake lashes to not feel like I look bald. The cognitive issues are a thing of the past, or something I've learned to give myself grace for. The peripheral neuropathy didn't go away and my right arm hurts often, but that got better after PT. If you have excruciating pain on the same arm as your port was in - don't live with it without having people look into what the scar tissue might be doing to your nerves. The taste buds didnt come back - so I focus on umami flavors and go for texture - love some crunch in my food!

I would still sign on the dotted line every day to get the toxic treatment that saved my life. Even on the worst days. Not a day goes by that I don't appreciate what modern medicine did for me and my family, and I will forever be grateful for the scientists and doctors who fought for a cure, for the nurses and doctors that treat this terrible disease every day.

This may be the last post, because I choose to look forward to the future and don't need to remind myself of how strong I had to be anymore. Whatever brought you here, hope you find hope. :)

On dirty lungs and clean xrays

Hello everybody!  I can barely belive it has been 11 months since chemo ended, woo hoo!!!

Sorry I have taken a while to post, again.  I think of things to write in the blog frequently, but there is such a diverse audience that I end up over-thinking what I'm going to write about.  

For example, I recently got sick, really sick, with bronchitis.  The cough was awful and the chest pain was bringing flash backs to when I was diagnosed. Both my husband and I were freaking out, and I didn't want to get others concerned.  The good news is that when I went to the doctor to get checked out, the nurse was concerned enough with my awful sounding lungs that she ordered an xray.  So, a little over a year after diagnosis, I was at the same medical office, in the same xray room, getting lungs of my xrays taken. I was soooo nervous and hoping that I the guy in the backroom taking the xrays would see nothing out of the ordinary, hoping that (this time) no huge mass would show up.  Luckily, or maybe because she sensed that it would help me, the nurse practitioner that saw me that day showed me the clung lung scan so that I would see it myself.  She showed me where my port-a-cath showed up on the scan, and how the line was well placed in the aorta.  She also said my lungs look surprisingly clear, but the most important thing was what we weren't seeing - the big shadow around my heart we had seen on May 2013. To make a long story short, it took me over 8 weeks of coughing and various rounds of antibiotics and steroids to get over the bronchitis.



Last I wrote the plans included seeing my oncologist in August and hopefully having a PET scan in September/October.  Unfortunately, because of the bronchitis incident, when I saw my doctor he said he wanted to wait to scan, he didn't want any sickness possibly skewing our results (which my husband and I decided meant we didn't want my dirty lungs to show up).  This means that we're back to waiting, which is such a tough state to be in when we're so close to getting updated and good answers. I fully understand there are worst states to be in (sick, in treatment, with bad news) but the scan-xiety of wondering is tough even when we try to logically control it. My type of lymphoma has the highest chance of return within the first 2 years, with the statistics showing the first year recurrence free to be very important, so these milestones and scans are things we look forward to very much.

It is rare to get a kiss without requesting it, much rarer to catch it in camera! :)

What else should I update everyone on? I am feeling better, much better.  Some days I have so much energy I drive some of my coworker/friends crazy - lately there are more and more of these, and I feel like I can keep up with my always-running around, always-talking, almost 3-year-old quite well.  Other days, I still feel aches and pains, residual numbness from the peripheral neuropathy, back to dealing with asthma every once in a while too.  However, none of it is unbearable and I remind myself the side effects are the price I pay for the treatment, for being cancer-free.  I still wish my taste buds were back, though!

Also, in honor of Blood Cancer Awareness Month, I am once again walking for charity. This time I am walking and fundraising in support of the Leukemia & Lymphoma Society (LLS), the same organization my friend Becca has been fundraising for and many of you supported. I fully believe that the research LLS funded led to my long term survival from Lymphoma.  I teamed up with a friend to do a jewelry sale with proceeds going to my walk.  The offer ends wednesday Sept 24th, so check it out now if you are interested! http://sild.es/CXb

If you would like to check out the beaded bracelets and wine charms she's making to raise funds, please see her Little Purple Shop here:

Relay for Life weekend was a success!

$1450 raised for American Cancer Society!!! And that is before we tally up employer contributions and what my friends raised (then we might be close to $2100!) The event has raised over $40,000 already!  You guys are amazing!!! Too many of our family members and friends are affected by this disease, and every new diagnosis makes me MAD and encourages me to do more to fight cancer!

Why I fundraise:

I've had to take it easy today after all that walking, but I wanted to give you an update on the event.  We were able to attend, and actually joined the festivities twice!  We went in the morning to hear some of my friends speak at the beginning ceremony. All the survivors were asked to go to the front of the stage ans introduce ourselves - I got to stand up with my daughter: "Hi, I'm Joelle, I'm 32 and I'm a one year survivor from Non Hodgkin Lymphoma." It felt awesome to say that!  Then, after convincing my daughter that she couldn't get up on stage, that the microphone was now out of batteries (which meant she couldn't sing into it), and after she gave high-fives to almost evert single person around us - I carried her while I walked half a mile (one lap) with all the other survivors at the event!!! Then the caregivers got to walk one lap and my husband took her with him! They ended their lap around the bounce house and she got to have some fun before we headed home to nap. 

The back of my new shirt:

Later in the day we had friends and family join us for a 3mile walk around the park - we had 4 strollers (3 toddlers and a baby), one college student and 12 adults! It was a slow moving group (baby spit up, or toddler had to go potty, or another toddler wanted to get out of the stroller, etc) but we had a lot of fun and got to do something good for charity.  I am beyond grateful to those that joined us!

As we approach the 1 year anniversary from my diagnosis, I want to say THANK YOU for all your help in the last year!!! I appreciate all your donations, kind words, visits, calls, texts, emails, cards, and overall support! Gabo and I wouldn't have been able to get through it without the help of our friends and family!

Link to my Relay Page: http://main.acsevents.org/site/TR?px=35672502&pg=personal&fr_id=57017

Relay for Life this weekend - and I'm walking!

"Life is what happens to you while you're busy making other plans." -John Lennon

Hello everybody! I know I owe you an update of how things have been going, but that is complicated and will take several posts.  Overall, I am doing well.  I have been feeling much better and almost like myself since I last wrote.  I returned to work full-time, which is mostly the reason I haven't had time to write, I crash when I get home!  I also have started to gain some energy, which also means I've been getting the "how can I help?" bug.  My company has an Employee's Community Fund where employees can contribute and a board chooses how the money gets distributed among local charities. When I first returned to work, I submitted a request for a grant for the Leukemia & Lymphoma Society's local chapter. At the time my brain was still pretty foggy so it was actually time consuming for me to write the letter of recommendation.  Well, last month I got to present LLS with a big check in the name of my Company's Employee Community Fund!  It felt awesome to be able to give back, and also to chat with one of the LLS employees and discuss volunteering opportunities.  I have grand plans of things I would like to do to raise money for LLS - but I keep getting sick and plans get delayed.

Which brings me to my other big news - months ago I was invited to walk the Survivor Lap at a local Relay for Life event.  For those that don't know, Relay for Life is a 24hr walk to raise money for the American Cancer Society.  At the time I signed up, I was hoping to at least be able to walk the Survivor lap but wasn't sure I could do much more.  Since then, I have been gaining energy and thought I could walk the 3.1 miles it takes for my company to consider it a wellness event and donate $100 in my name.  To fund-raise, I hosted an online jewelry party, and my friend and Silpada rep donated proceeds for the event to my Relay fundraising. I kept thinking when I had more time I would try to get a local restaurant or other business to do a fundraiser for us but I frankly have been getting wiped out at work.  However, I have been able to convince some friends and co-workers to join me in the walk, and I am very excited about that!

Well... Unfortunately, about 3 weeks ago I had to go to ER because my horrible sinus infections that I had been trying to ignore turned into a 101.8 fever - and with my port I can't afford to be ignoring infections.  While in the ER they discovered my white blood count was close to chemo-patient low, so I was admitted. I was in the hospital for 4 days, then got to go home. I think I went into work for 4 hours so that I didn't automatically go into medical leave, and a couple of days later I got on a plane to Puerto Rico so that I could witness my baby brother and my awesome sister in law get married!  Unfortunately the sinus headaches and ear ache returned even before we flew back home, so doctors put me on really strong antibiotics, have been monitoring my seemingly declining white blood counts, and I'm basically on fever watch again.  I started taking antibiotics on Tuesday and still don't feel great - although I do feel better.  I am very upset that I am feeling sick again, but my oncologist has been great at letting us know that he doesn't believe any of these symptoms to be a recurrence of my lymphoma, and my general doctor reminded me that people get sinus infections and ear infections and there's really not much I can do about it.  All this a long story to explain that while I'm very excited to participate on the Relay this weekend, I'm no longer sure I would be able to walk the 3.1miles I was hoping to walk.  I'm sure if you are reading this you probably think I should be taking it easy anyway, but I had been looking forward to pushing my achy body to reach that goal, to feel like my efforts made a difference.

Feeling sorry for myself I logged into the Relay for Life site and just found out that I am one of the top 10 individual fundraisers for the event! I'm sure that will change between now and Saturday, but I am really pumped for this event! I can't wait to hear some of the cancer survivors that have become my friends in this crazy journey speak, walk the survivors lap with children, men, and women who have (or are fighting hard to) beat this disease, to see my husband walk the caregiver's lap, and to meet up with friends.

Check out my page and why I'm walking! And please wish me good luck!
Joelle's Relay for Life Page

On returning to work...

I will apologize for not having written in a while, but I've been either enjoying myself when I get energy, or just really tired - which makes it tough to then decide to sit down and write versus just laying in bed and crashing!  After 3 months post chemo, and almost 6 months out of work, insurance and my doctors thought it might be a good idea for me to go back to work.  My disability coordinator at Aetna came up with a return-to-work plan where I basically would work 4 hours a day for 2 weeks, 6 hours a day for 2 weeks and then go back to full time, my doctor signed it and after more paperwork, phone calls with HR, medical and insurance people - I started working again!

Goofy smile before first day back at work
When I had first considered going back to work after end of treatment, for some reason I thought my oncologist was going to have me return within the first month after chemo and that made me very anxious.  I was worried about my energy levels, the body aches, about my brain fuzziness, and in general how well I would handle spending 8 hours a day at work with all the issues I was still dealing with.  By the time the 3 month mark came around, I was feeling ready to try it.  I was still very concerned about my memoy issues - although I'm happy to report that there's only been a few people whose names I couldn't remember.  I was happily surprised to realize that I hadn't forgotten as much as I had, and also, that it is coming back little by little.  It has been a plus to have so many coworkers stop by to say hi, let me know I was missed and just to check in.  It seems they didn't forget me after all.

I am extremely grateful that I have been able to come back part time, because I am super tired every.day.  When I was working 4 hours, I ended up coming home and either napping or at least resting on the couch or my bed until my husband and my little ball of energy got home.  Working 6 hours a day has been EXHAUSTING, partly because I have this cold that I can't seem to kick and the never endless allergies, but mostly because I don't get to rest much during the day.  Even with the temporary access to a closer parking spot, I end up walking a lot at work.  I have to force myself to walk slowly, because if I walk at my usual fast pace I get winded.  However, it is getting better everyday, and I hope that in a month or two this too will seem like a distant memory.  I am looking forward to working out, maybe going back to the gym, or at least being able to go on walks around the neighborhood without feeling like my body is giving up on me.

The other thing that had really concerned about going back to work is that up until now, I've mostly been interested in working the latest problem.  My aunt once described this as liking to be "the hero" or "the firefighter" that is constantly putting out the emergency of the day.  I am thankful that management understood and have given me assignments that are closer to being the big problem that we need fixed by next weeks, or 2 weeks from now - that has given me time to remember how to do and find things without having the pressure I would usually put on myself.

I am also having to keep reminding myself that not every ache means that the cancer is back.  This is such a hard thing to deal with, and I know it is very very common amongst cancer survivors (and I'm sure with their caregivers too!).  The second I complain about pain in my chest, shoulder, or arm, my husband is asking questions like: "Does it feel like nerve pain, like before?", "Where is the chest pain, where the mass was?"  The truth is that it is very difficult to answer those questions.  Some other patients of PMLBCL mention that when they are anxious they feel a chest tightness and the area where the mass used to be hurts.  I think sometimes that area hurts because it is still tender, I did have a nice little surgery that cut all the way almost to my heart so it makes sense it will get sore when I carry my 25-pound daughter a little too long.  Anyway, this too, happens but is something we're learning to live with.  I think I feel the pain/numbness of my fingers getting better - almost like it is traveling down the hand and it is the fingers (especially the tip) that are the most numb right now.  My fingernails and toenails are still very brittle and all are cut as short as possible for now.

Becca after running her first half marathon!!!!!  And look at that sign! (Yes, i got teary-eyed)

And of course, I can't finish the post without talking about my friend Becca's half marathon run!  She represented the Leukemia & Lymphoma Society in Miami on Superbowl Sunday, after raising over $3,500 for the cause!  I was and am extremely humbled for her initiative, and for all those that donated or supported us along the way.  I might write a separate entry on that, or maybe I'll let her guest write the next blog post.

Since I know you all love seeing the updates, here is another picture of my hair growth - taken on sunday (approximately 15 weeks since end of chemo!)  One of my daughter's good friends at daycare asked me this morning "Why is your hair gray now?"  She's right, while it's not grey in the way aging hair turns - it seems to be a really dark shade of gray right now (definitely not brown or black).  I'm going to let it grow a little more before I visit my stylist for some color. :)

3 month update - Part 1

Wow, I can't believe how long it has been since I've posted!  I keep thinking of the blog and what I want to write about, but I wait until I think I will have enough time to sit down and get my thoughts together... and then I take too long!

So, I'm going to divide my 3month post-chemo update in parts.  I will start by saying that I am feeling MUCH better.  On a weekly basis I realize that I am doing things that I wasn't able to do before.  I catch myself picking up my daughter and holding her upside down (as she requests) and being grateful, because I remember not being able to even hold her in my lap just months ago.  I still get tired, and nap on the days that I can.  My taste buds and appetite are not back yet, although I think I am able to taste a little more each month.  I initially thought that I should take advantage of the lack of taste buds and focus on healthy foods, but eating a salad is like trying to eat cardboard, so I've had to improvise.  Tomato-based sauces taste good, so Mexican and Italian foods are my favorite.  My latest obsession is green smoothies!  The best recipe I have found so far is with spinach, pineapple, banana, and a little bit of lemon.  It is sweet enough that even my daughter and husband will drink it, which is a major plus.

What else is new?  Well, my daughter is now TWO years old!  Every day she looks a little less like a baby and more like a little girl.  She continuously tells us she is a "big gurl" and loves petting my "kitty cat hair."  Oh yes, I have hair!!!!  It has been growing so fast!  I have to admit that I checked out my hair very often at first, I feel like I look more like myself as the hair comes in (and the prednisone swollen-ness has gone down).  Inspired by a young lady from my high school who is having to deal with this stupid cancer too early, here's a compilation of the different looks I've sported in the last couple of months (latest pictures are the 2 corner ones in the bottom row).

Finally, I have started work! I am going part time for now, on a phased return to work schedule.  It is close to 4 hours a day for 2 weeks, then 6 hours a day for 2 weeks, then 8 hours a day.  I was VERY anxious about returning to work.  The anxiety was partly fueled by the "what if it comes back" questions that I try very hard to keep at bay, but they do come up every once in a while...  I am still experiencing the chemo brain haziness, which makes me forget names, say the wrong words, or take longer than I otherwise would have at easy math problems.  But even that is slowly getting better.  After having to deal with lots of paperwork between my general doctor, my disability insurance, and my work's medical team, my choices were either start last friday for a couple of hours or have to wait a week or 2 until the whole process was repeated.  I decided to go into work for 2 hours before spending an hour driving up to UCLA.  It was a 20 minute appointment to get the port flushed and say to my favorite chemo nurses, then 2 hours on the drive back home.  But, it was a great day because I was starting to get back a little bit of normalcy.

Before logging off, I want to say thanks for all the good thoughts and prayers that you have made in my cousin Coral's name.  She is still fighting, and we continue to celebrate the little victories until she wakes up.

PET scan on Friday (tomorrow!)

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

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

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

Thankful - belated thanksgiving post

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

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

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

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

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

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

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

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

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

Ever Need Some Motivation?

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

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


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



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

Halloween! (End of chemo week 4)

Hello friends!

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

Symptoms - 3 weeks after chemo

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So, what's supposed to happen?

Last day of chemo: Friday

Last Hell-ish weekend

Last day of treatment: Monday

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

Final round starts tomorrow!!!

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

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

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

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

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

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

I'm finally calling round 5 done

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

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

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

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

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

Round 5 starts tomorrow!

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

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

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

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

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

I had the Godiva cheesecake... :)

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

Whew, what a week!

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

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

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

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

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

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

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

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!