I guess it is best to start back at the beginning of the middle.
About 3 months ago I got sick. Doctors thought it was a virus. I felt better after a few days but I was left with a lingering cough. After a couple of weeks of that, I started to get nervous. I followed up with a respiratory doctor who said my lungs were in good shape and it was probably an irritation in my trachea or somewhere so he gave me some asthma medicine. The theory was to treat the simple, obvious stuff first before worrying about the more complicated stuff.
The asthma medication didn’t help. As it didn’t 2 years ago and 1 year ago.
I started to feel pressure building in my head, puffiness behind my eyes and chest pain. I went to see my interventional radiologist (my homeboy, Dr. Loh) and he booked me a CT scan. This was about 5 weeks ago.
The CT scan showed that the tumor had grown a little since February and was pinching my vena cava between my stent and my heart. This didn’t come as much of a surprise to me as I was feeling the SVC symptoms, but I still held out hope that somehow it was scar tissue or some such. A PET scan soon after confirmed the hot spot. And here we are.
Apparently, the BEAM chemo and autologous stem cell treatment didn’t stick. The problem seems to be that the size of my mass (referred to as a ‘bulky mass’) can hide all sorts of rogue cells. Difficult to get them all. And not uncommon for a case like mine to not get taken care of with the ABVD and even with the more intense BEAM chemo and stem cell transplant.
After consulting various doctors – both in person and online – we followed up with Dr. Robert Chen at the City of Hope. COH has access to a drug called SGN-35 (or Brentuximab Vedotin). This drug is on the verge of FDA approval so I can get access to the drug through an expanded access trial.
Dr. Chen and his team jumped into action and I was approved for the drug within a week. I had my first infusion on May 5th. The drug is a type of chemo that targets CD30 cells, a defining marker of Hodgkin’s Lymphoma. This means that the drug is much more targeted than traditional chemo. This helps its effectiveness and also reduces the side effects.
I felt pretty crappy for a few days after getting the infusion – fatigue, slight nausea, lack of appetite. Typical chemo stuff but pretty mild considering what I’ve been through. And I was mostly back on my feet 4 days later. In addition to lighter side effects, I only get an infusion every 3 weeks which means I have lots of ‘normal time’ in between infusions. And I won’t have any long stays in the hospital for each infusion – I’m in-and-out in a few hours.
And, I can tell you with confidence, that it is working. The swelling in my head has gone down completely. My cough has completely disappeared. I don’t get dizzy when I bend over (as much). At the very least, the tumor around my SVC has receded allowing me some relief. My hope is that SGN-35 destroys the tumor – really beats the shit out of it – and it gets as small as possible. COH will give me a PET scan after my 2nd or 3rd infusion.
Now, SGN-35 isn’t a cure. I will need an allogeneic stem cell transplant when I hit full remission. This is similar to the stem cell transplant I had in November, except this time I will be getting someone else’s stem cells (hopefully, my brother if he is a match). The theory is that my immune system can’t fight off the Hodgkin’s Disease so hopefully someone else’s immune system can keep it at bay. I’m not looking forward to another month in the hospital and all of the additional complications that come along with an allogeneic stem cell transplant…but let’s worry about one thing at a time.
On a more personal note, I can’t tell you how difficult it has been for me to open up WordPress and have to continue writing about my experiences with cancer. It fucking sucks. And I’ve been putting it off for quite awhile.
Some people asked me about a month ago if I was going to ‘wrap up’ my blog in some way (this was before I knew for sure that I still had cancer). Other people have asked me to keep blogging because I’m a good writer (which is flattering).
I’ve said this before – this blog is a weight around my neck. It represents everything that has gone wrong with my life in the past couple of years. I look back on the early posts – so carefree and witty, so confident that Hodgkin’s Disease was going to be a footnote in my life – not the condition which would define my 30’s. And I can see myself slowly, over time, growing up and growing into being a long term cancer patient.
So, why write an update today?
I got a message last night from Ben and a comment today from Lisa.
I have no idea who these people are (although I’ll get to know them soon enough). Lisa is on prednisone – I assume she also has Hodgkin’s Disease. Ben is on his way to a stem cell transplant of his own in England. They both thanked me for writing the blog. As have others in the past few months.
To both of you – and to Karin and to Jess and all the others – I say: You’re not alone.
It took me months to figure that out. I’m still figuring it out. If these few words about my experiences can offer some insight, some education, some helpful links…then it is worth it.
If stories about constipation, being called “Stephanie” 3 times in one day at your new hospital, fighting with pharmacies, finding inspiration and strength and some kernals of wisdom about how to keep fighting are of interest to you – then feel free to continue to lurk around this blog.
Someone pointed out to me that I used to write on the blog as an emotional outlet. I don’t really need to do that anymore. Somehow, sometimes, I’ve come to accept cancer into my life. I still struggle, but my struggles have evolved. Call it one part resignation, one part humor, and a big dash of “getting on with it”.
I’ll write soon about changes we are making in my nutrition to help support my immune system and my weakness for blueberry muffins.