Tuesday, September 23, 2014

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:


  1. Hi Joelle, Is it possible that I can get your email or phone number to contact you? My email is kudutsadee@yahoo.com and my phone number is 225-650-8372. I just recently diagnose with Primary Midiastinal Large B-Cell Lymphoma, exactly the same type like your cancer. I am getting the same chemo like you. Thank you for your bloc. It is really helpful and tell me what will happen when I get chemo.

    Did you get second opinion on the best treatment for this type of cancer? I have not get second opinion yet, but thinking about it. Base on what my oncologist said he recommend to get R-EPOCH because of the high cure rate and no radiation needed after chemo.

    Thanks, B

  2. Hi Joelle,

    I found your blog today as I was googling side effects for EPOCH-R. I just finished my second round earlier in the week. I was diagnosed about a month and a half ago (when I was 36 weeks pregnant) with Primary Mediastinal DLBCL. It was really helpful to read about your experience with the treatment. I hope you're doing well :)

    If you happen to get this message I also wondered what Facebook pages were helpful for you to connect with other people going through this were.

    Thank you for writing about your experience. Super helpful to know what's coming. I've been visualizing finishing treatment and doing the LLS walks - so great to see those pics in your blog!


  3. Hi Marianne! Thanks for writing! I am SO so sorry you have joined the cancer club, and doubly sorry to hear it happened when pregnant! However, I am very glad you found my blog and that it was helpful! How is your baby doing? How are you? Maybe I should post some more about FB page on the blog (I responded to Dee privately last time). The FB page for primary mediastinal DLBCL is https://www.facebook.com/groups/PMLBCL/ - I just sent an invite to your email. You will find a few other women diagnosed in late pregnancy (kids happy and healthy nowadays!) I look forward to chatting with you on that site. :)


Disqus for joelletalks.blogspot.com

About Me

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