This week’s interview is with Emily Sun. Last year, Emily was on a quest for stem cells and I blogged about it here. She’s got her cells and has been thriving in the year since. Emily currently lives in Australia with her husband and son.
Can you tell me a bit about your diagnosis story? How did your first bought with NHL get diagnosed/discovered? And then your later recurrences?
I find it really difficult to talk about this kind of thing. I just refer people to my treatment blog’s home page. One of the reasons I can’t really go into detail about it is because I am sick of giving any more attention to the diagnosis and “the whole cancer” thing. I fought it for nearly four years, that’s like an Honours degree here in Australia.
I’m looking towards the future and putting the past behind me. But in a nutshell, it was pretty typical of most young adult cancer diagnoses. I thought I was run down or stressed, so did the GP because I was a young mother and doing quite a few things at the same time. It turned out to be cancer. It’s why I just tell everyone who feels run down to going to their GP and ask for a blood test. Most blood tests are still free here in Australia – for now. Antidepressants do not cure cancer! I was stressed and anxious because my body was colonized by rogue b-cells!
How did you and your husband talk about this with your young son? Is there anything you’d do differently?
I was sick over three or four years, so I can’t really remember what we told him at the beginning. I know that a book called Mom Has Cancer really helped because it was about a boy whose mother had cancer and she survived.
It was a bit harder upon relapse. I had a lot of support from my family, the school community and friends, as well as the Australian Cancer Council. Both my husband and I have a therapist – this is subsidized by medicare in Australia.
The Cancer Council referred my son to a very experienced play therapist when we expressed our concerns about how he was coping with it all. All of these things helped.
I’m not the sort of person who has regrets anymore, so there is nothing I would do differently. We all just do the best we can at the time with the knowledge we have. I was very fortunate that I was so well supported.
Can you tell us more about what a stem cell transplant is? Why is it important for Asians/mixed Asians to get on the registry?
When I relapsed one of the doctors told me my only cure was to get donor stem– ie. the cells in our blood that have the potential to be any type of cell. That is why I went on this crazy global search for long lost and estranged relatives, and my friends helped me launch the Emily Needs Stem Cells campaign.
As I had my own stem cells stored and harvested the first time I got sick, my specialist decided to use them instead and radioimmunotherapy. I didn’t have the option of heading to the NIH for experimental T cell therapy even if I could figure out the logistics of it because I had CNS (involvement with her brain) involvement.
Once again, I was really lucky that one of two or three places Australians can access radio-immunotherapy here in Australia is at my local hospital. I had “hot-ritux” which is similar to Bexxar except it uses ritux not the other drug. I used to know what it was called but I’ve been consciously trying to forget everything I learnt about lymphoma. There’s really no use knowing so much when you’re not a doctor or a nurse. It’s all very new and experimental, but I guess all cures are at some stage. I had nothing to lose by trying this. It was a far better option than going for the allogeneic transplant.
Once again I was really very lucky that one on the doctors on the original team, he’s now my specialist, told them to harvest my cells the first time around for insurance. I’m so grateful that he did that.
I knew that it would be very hard to find an Asian donor for a few reasons, but the main one being minority groups do not really donate blood, let alone stem cells. Actually, I’ll let my more articulate friend explain:
The Banana Lounge: Asians Seeking Asians
I am really hoping that there are big leaps and bounds made in treating blood cancers in the next few years, so donor transplants will be a thing of the past.
I know you’re a talented pianist! Did you find music a good way to deal with stress? Why or why not? What does making music do for you (in general)? How does it make you feel?
I only started playing piano again when I got sick. I played in my teens like many Asian girls of my generation, but burnt out. I was stuck at home a lot and there’s only so many DVDs and downloads you can watch. I wasn’t able to focus on reading or very much else.
It wasn’t until I nearly died that I realized how much I love music across different genres.
It helps me express emotions for which there are no words and I think setting myself the challenge of learning something new throughout treatment made me feel alive. I was still doing something and it was very tangible. I took my keyboard into the transplant room with me and kept playing except on the few really bad days. I didn’t want to see anyone except the nurses, the volunteers and my doctor when I had the transplant. It was also a good way to bond with my son who had started taking piano lessons.
I have been reading about neuroplasticity lately and I’m sure keeping my mind active that way has helped combat the cognitive deficits I’m supposed to have because of all the treatment I’ve had – which included whole head radiation. Lol.
Lastly, what are a few tips you wish you had known when you were first diagnosed? Are there any tips you can share for survivors with young children?
I mentioned earlier on that I was initially diagnosed with stress induced anxiety – which is not entirely untrue since the mysterious symptoms of cancer can cause a lot of stress. It was impossible to know back then what a difference an excellent specialist makes. When you’ve never been critically ill, you just assume every doctor had to go through some vigorous training to be a specialist so they would all be decent especially if a hospital employed them.
It’s been about four years since my initial diagnosis and in that time social networking has exploded exponentially so it is easier to find other people who have been through the same thing. However, it’s a double edged sword because sometimes it’s not helpful to compare yourself to others especially if you are the one who keeps on relapsing. I know it has been a long process to get me to this place of acceptance. It is hard to feel grateful for still being alive when you are not really sure how much longer you will be alive for, but I guess it’s true for all of us. I’ve always had a very rational approach to treatment so I wouldn’t try any alternative therapies.
As for survivors with young children, I guess it depends how young they are. My child was three when I was first diagnosed, and he recently turned seven. I was just the sick mummy in bed for a long time and felt really guilty about not being able to be there for him. These days I try not to ruminate so much. There really isn’t any point. It is what it is. I would say look after yourself because if you are feeling happy, your child will reflect this.
A friend of mine who is a research student in psychology gave me some handy hints. I definitely felt a big turnaround when I applied them.
1. Be self-compassionate: Don’t be so hard on yourself. Just remind yourself of how awesome you are just to have said yes to treatment. This also includes self-care. Doing things that feel good. For me it’s the routine of washing my face in the morning with my overpriced essential oils cleanser. It’s just really little things that you don’t think would make such a big difference, but it does.
2. Be mindful: Just notice how you react in certain situations and instead of just getting lost in the emotion. Label it.
3. Find others in a similar boat: I left the support group I met you on, but I do check in on others who have been through something similar. Knowing that they go through similar ups and downs makes me feel less alone.
Thanks, Emily! If you’d like to donate stem cells you can find more information at Be the Match.