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.