More Machine Than Man

Monoclonal antibodies, therapeutic antibodies, human granulocyte colony-stimulating factors. I've always wanted to be bionic, it was a real childhood fantasy. Chemotherapy wasn't quite what I'd had in mind, but I'll go with it for now. It seems to be the right program.

The first treatment is done, but not without a fair amount of anxiety and apprehension preceding it. It lasted ten hours, but I was able to doze through a lot of it. Other than mild anaphylactic shock from the rituxan which was immediately treated with an intravenous course of benadryl, I felt ok. One down, five to go. I feel now that I can do this, now that the mystery has been somewhat unveiled.

I really wasn't expecting such a radical change to my sense of smell, taste buds and stomach. And it seems to be getting more intense each day. I can say I was warned about this but am a bit surprised by the radicalness of it all. Everything has a lingering smell/taste that causes a direct response from my stomach. I've had to go on a super lean food program, I just can't stomach much of anything. Basically, crackers, toast, applesauce. Basically no nutrition. The few weeks before chemo I bulked up on fresh juice and tons of raw veggies and whole grains. Little did I know that I would need this in the weeks to come. Hopefully my body stored up some vitamins and minerals for the coming onslaught. I'm wondering if anyone has any advice on a course of probiotics in conjunction with chemotherapy - let me know if you've heard any success stories or if you think it's a good idea or would work. Also, any natural ways to counter the difficulties digesting food while on chemotherapy. I've started with ginger and mint tea and that has helped tremendously.

Thanks to everyone for your phone calls, emails and postings of support! I'm sorry that it's taking me a while to call/write back. I have been pretty low energy, but I look forward to being in touch soon.

I now know my chemo schedule and would love it if you are available for a ride to or from the hospital (Good Samaritan at Wilshire and Lucas downtown). It will be dropping off in the morning and picking up in the afternoon. One way is fine, I know people are generally working in the afternoon but I think some of you are in the neighborhood or have flexible schedules. Please think about it and let me know. These are the dates: Sep 26th, Oct 10th, Oct 24th and Nov 7th. I'm covered for Sep 10th since my sister will be coming to town to hang with me.

Let me know if you are around on the weekends to hang out, maybe you could bring over a homemade meal or a healthy frozen dinner from whole foods, or just yourself. I would love to just see folks and visit or watch a movie. I will for sure be homebound on the weekends after my chemo treatments and would love some company.

A Quick Update

Hi, all. Susan had her initial round of chemotherapy at Good Samaritan last night and all went well. She's cut her hair short and she looks beautiful, more beautiful, in my opinion, than her old ubiquitous ponytail. She's been excited to read the emails and blog comments and is deeply touched by everyone's reaching out. Please keep it coming. They're putting a port in her for better access during the chemo process tomorrow, and then she should be able to be discharged. I'm going to let her tell her own story when she gets home, but for the moment I wanted to update everyone and post a recent picture that isn't as scary as the one below. Thanks for all your thoughts, love and support. -Ben

Home from the Hospital

I have non-Hodgkin Lymphoma. I was diagnosed on August 18th 2008 after having almost died from massive swelling and fluid build-up in my chest, around my lungs and heart.

I keep flashing back to the weeks leading up to August 8th, especially the last week.  Every time in my life I've ever gotten sick, eventually I've gotten better.  Often without going to the doctor, and often with naturopathic remedies of which I am a big believer.  I guess I kept thinking that I was going to get better, that my breathing would go back to normal and that my intense fatigue would go away.  When I finally went to the doctor, the first thing they did was a chest xray and the second thing they did was check me immediately into the hospital.

The xray showed a mass growing in my mediastinum and CT scans a few hours later confirmed this.  The mass was pressing on my esophagus and the superior vena cava artery of my heart.  There was a pleural effusion, fluid, behind my right lung and fluid in the pericardial sack around my heart.  Surgery was scheduled the next morning to biopsy the mass, and insert drainage tubes into my chest and the sack encasing my heart.   The fluid was successfully drained but the biopsy was a bust; they had to go into my chest for a second one.

The second surgery was scheduled for the morning of August 13th 2008, I was still in the Critical Cardiac Unit at Good Samaritan Hospital in downtown LA.  

My experience with surgery and general anesthesia was very intense, I felt that I was surrendering myself to a kind of death. It's the ultimate giving up of control, to a bunch of relative strangers.  

The second surgery was successful and the slides of the biopsy were sent off to an expert lymphoma pathologist at USC Norris Cancer Center and the waiting began: Monday was the day.  The preliminary diagnosis was Hodgkins with a treatment regimen of 12 chemos for 6 months followed by radiation.  The update on Tuesday evening was non-Hodgkins with a revised treatment regimen of 6 chemo treatments for 3 months.  The news was better; we were all relieved.  I checked out of the hospital that night, Tuesday August 18th after being there for 12 days.

Bone marrow biopsy results on Friday showed negative results, so the cancer hadn't spread.  A PET scan the same day showed that the mass was already smaller, a result of steroids and I believe a radical change in my diet that I began immediately after the second surgery.  

I consulted at USC Norris for a second opinion on the treatment and the doctors agreed: CHOP chemo plus rituxin, 6 times every two weeks. The OB/GYN Oncologist recommended a shot for preserving fertility through the chemo process, I took it and was grateful to have been given the option. I might come out of this intact. Often the chemo process can make you sterile. Modern medicine is amazing.

It's the weekend now, and today is hair and wig day. I'm gonna go short so that when my hair falls out it won't be so traumatic. I bought a bunch of hats yesterday, I may end up just wearing those instead of a wig. I've heard the wig can be kind of itchy and annoying.

I start my chemo tomorrow, I'm hoping that the side effects won't be too severe. I'm nervous but also looking forward to getting this whole process started. The chemo therapy for non-Hodgkin Lymphoma is generally very successful with a high remission rate, one of the highest of all I think.

My boyfriend has been amazing through this process, supportive and giving the love full force. His mom and dad happened to be here on vacation when I was hospitalized. They spent their vacation in the hospital taking care of me, keeping me company, giving me strength and courage. Dad is back home now, but Mom will stay for another week to help me get through this initial treatment. I am grateful to have such amazing support.

I'm putting a schedule in the blog of when my treatments are happening. Hopefully they will be on Fridays after the first couple, so that I'll have the weekend to recover and be back at work on Monday. I would love any help with rides getting to and from the hospital, or just hanging out in general at my house on the weekends for the next three months. Maybe some low-aerobic activities like going to the beach, or catching a movie.

More writing this week after my first treatment and more details regarding my exact schedule to come. I thank my friends for coming to visit me in the hospital and for all the thoughts and well-wishes, I feel your support and it means the world to me. In the difficult weeks ahead it will help me get through the rough patches.