Let's Start at the Very Beginning

At the risk of sounding like a new member at a meeting of Cancer Caregiver's Anonymous, let me begin.

My name is Megan. My mother will be receiving a bone marrow transplant for her Stage IV DLBC Lymphoma this winter.

Well, now that that formality is dispensed with, let me get to some of the more interesting details about my purposes of writing this blog. Some of the sources that have been immensely comforting to me during my family's "journey" with cancer are blogs from fellow patients. I've clicked through the entries that cataloged everything from their various drug regimens to their day-to-day insistence on enjoying life. I'd like to contribute to that body of knowledge that has done so very to reassure and educate me with a particular focus on those younger caregivers who find themselves occasionally switching roles with their parents.

Happy Families Are All Alike

I am currently a 24-year-old Ph.D. student at the University of California, Davis.

Go Aggies!

I was privileged enough to enjoy an exceedingly happy childhood.

Pretty much a Big Deal from the start

Our sweet little family of four enjoyed adventures from my father's tours of service in Asia:

Notice the Hong Kong skyline in the background. Also, I feel
like Tyra Banks would appreciate my "smizing"

To family vacations in Europe.

Making faces in Scotland

My parents and my brother encouraged me to set out on my own adventures. When I was 19, I returned to Asia by myself for the first of many many trips to study Mandarin and Chinese literature.

I was retracing my parents' own independent streaks, symbolized in their own forays to Beijing in the early 1980s

Favorite picture ever.

By the spring of 2010, I was beginning my greatest adventure of all: graduating from university and moving to California to start learning all new languages and training to be a professor.

To be honest, when I decided to move 2,000 miles away from home, the thought of potential disaster (medical or not) did cross my mind in much the same way that you might casually call to mind the sharks swimming far off to shore when you go to the beach. 

I was just settling in to the new routine of taking two planes to get back to the ole' homestead in Virginia by December 2011. That month, we went on a trip to the Grand Caymans to flee the cold, East Coast winters

Christmas. 3 Days Before the start of symptoms

Road to Diagnosis

On December 28th 2011, my mother came down with an intense migraine. We thought it was a particularly bad sinus infection, but a few weeks later she started to have trouble with her eye. Eventually it was so out of focus that she could only function with an eye patch. (In true Christine fashion, she decided to sew her own prototype. It was a flesh-colored cylinder that slid over her glasses). The migraines only got worse and worse and were soon accompanied by "dagger-like" slices of pain. When I visited during my Spring Break, I noticed that she would often curl up on the side of a couch and rhythmically rub the side of her face. For a woman who can bear pain so well that we laugh about the time "Dr. Jonathan" reset her broken toe on a hike, this was clearly a huge problem. We were a bit distracted by the main symptoms, but it's worth noting that she did experience fevers and some night sweats that are symptomatic of lymphoma.

On May 11th, Mother's Day Weekend, our long search for a diagnosis came to an end. My mother was diagnosed with a common and aggressive form of lymphoma (Diffuse Large B Cell) and started on an intense Hyper CVAD regimen with accompanying intrathecal chemo and Rituxan.

Treatment

The good news is that my mother has weathered this particularly "nasty" (<-- doctor's words) chemo regimen particularly well. She experienced some bad mouth stores, fatigue, and elevated heart rate, but no nausea. She did become profoundly neutropenic after many of her treatments and checked into the VCU oncology ward more times than we liked... but in the end it was a remarkably smooth 6 rounds of Hyper CVAD. It was an in-patient regimen that required 4-5 days of hospitalization each. She achieved complete response (NED - No evidence of Disease) after her fourth round.

Now she is going through a few more rounds of high (read, VERY intense) dose methotrexate to specifically target the central nervous system. This treatment also involves 4-5 day hospitalizations. She just finished her TWELFTH hospitalization since May.

You can read more about the experience from her perspective on her own blog:

http://greatesthealingtherapy.blogspot.com/

Watching the Olympic opening ceremony

A Caregiver's POV

From my perspective, the process has been confusing. I've had to constantly choose between dropping everything to be home and progressing through my very busy and demanding career path.  This summer I chose to soldier on with my intensive language program in Beijing and teach an upper division Chinese lit class. 

It was incredibly difficult, but I've realized that fight against blood cancers can take a loooong time. I'm glad that I seized opportunities while they were available to me, because now I am in the position to help my parents in a much more tangible and productive way.

What's To Be Done?

This Winter, I will take advantage of the UC's quarter system to take a few months off as my mother goes through a bone marrow transplant. I'll fill everyone in more as the details become clear on the type of transplant she will choose.

* An Auto transplant (using the patient's own stem cells) is not a good option because it does not eliminate the chances of a relapse in the central nervous system to the degree that we'd like

* An Allo transplant (from an unrelated donor) looks unlikely as my mother has not had luck locating a donor from the Be the Match registry.

* SO we are looking at a double cord blood transplant or a haplo-identical transplant with stem cells from either myself or my brother. 

In Conclusion

I've graded too many undergrad essays not to end that way :-)

Lymphoma has led my entire family down a winding, confusing path. Sometimes I am powerfully hopeful. On other occasions, the uncertainty really does a number on my schedule-focused mind. In the end though, I can only be grateful for my family, friends, and second-chances provided by the VCU Dalton Clinic. At this point, I'm ready to begin the transplant process and see my mother enjoying a more stable quality of life.