It’s now been four days since I received my last shot in the current CODOX-M regimen and I revisited my blog to see how I was feeling at the similar point last time. Last time I was in hospital and had just about learned the ropes. I had problems with mouth sores which I was keeping in check with the “magic mouthwash”, a cocktail of lidocaine, Maalox (specific variety unknown), and Benadryl. I also had the early symptoms of mucositis. I was also taking dilaudid on a PCA (Patient Controlled Analgesia) device to control the mouth pain, but in hindsight I think it didn’t do much good. Compared to then, I am doing much better at home. I am a little short of breath, and any time I sit down to read or watch TV find myself drifting off to sleep.

I have been corresponding with two other Burkitt’s patients, and a common thread is how difficult it is at the beginning of the treatment.

1. First off, you’re sick. Burkitt’s is incredibly aggressive and exhibits itself in all sorts of ways. In my case, it was almost entirely limited to tongue and the jaw. And even though I was admitted within a few days of the symptoms exhibiting themselves, it was already stage 4.
2. Second, most patients do not know how a hospital works, and it’s far from clear who’s in charge. I met a multitude of doctors in the first few days and they kept asking me the same questions. I assume it was easier for them to ask the questions over and over than to actually take a few minutes and read up on my case.
3. Third: Insurance worries. Fortunately, my wife Mo is very well organized and was able to handle this, but there was a lot of initial paperwork to process, that I simply could not have done myself. Heck – my mouth was so swollen that I couldn’t hold an intelligible phone conversation, and I did not have email access in the first few days.
4. Fourth: The pain medication that you get clouds your ability to think straight.

DFBWCC was very good in providing social work support, and I would like to acknowledge that, but there is only so much they can do.

If anyone else has items to add to this list, please post them or email them to me at [email protected]. I am trying to gather my thoughts for a paper that focuses on 1) increasing the role of the patient as part of the team in medical decision making, and 2) focusing on safety improvements during the particularly vulnerable period of patient admission and initial treatment.