We got this email from her doctor the other day “great news! the chromosome analysis is back for rachana’s day 29 bone marrow biopsy. they are totally normal. so all the extra copies that we saw at the time of diagnosis are gone, indicating a nice/deep remission.” So, even with a thorough scan they cannot see any bad cells i.e. she is cancer free. The rest of the treatment, next 6-8 months of chemo and 2 years of tablets is to keep the cancer away. The doctor’s goal is keep her clean for 5 years as generally you don’t have to worry about this if you stay in remission for 5 years. So, clinically, she is doing great. But the reality is that she is still going through chemo and so is generally very tired, is nauseating and has regular body aches. On Thursday night things were a little tense as her temp reached 100.2 and we are instructed to call the doctor at 100.5. She also had tummy aches and I went through the questions I heard the doctors ask during her hospital stay; we both concluded it was just gases and cramps. But we also had 1-2 days where she was active and spent sometime with the kids.
It must be difficult for doctors & nurses to get trained, or for a institution to create a good training and testing program. In these short (or long) 6-7 weeks Rachana has seen it all when it comes to the competency and skills of the medical staff she interacted with. Some doctors were really good at explaining complicated things in easy to understand and compassionate ways, some were just not passionate enough. Dr. Vusirikala and Dr. Patel were those who was a just awesome at explaining things. Some procedures were done with such skill she barely felt a thing. She received chemo in her spine about 3 times till now. The first two times there was discomfort but overall the procedure was done by a skilled and experienced individual; the one she received on May 9th was not as good. The doctor, or maybe the trainee, had to try 2 times to hit the right spot (they use a live x-ray to guide them) and it seems during the procedure at one point Rachana felt loosing sensation to one of the legs. They were injecting chemo into her spinal column which is the main neurological thoroughfare; one wrong move and a nerve and in turn a body part can be badly affected. She was in pain from this procedure for a whole day. I’m sure the doctor was trained well, passed all the tests, practiced his skills on non-living subjects; but everything has a first time, which is a little rough compared to the second, third or tenth act. Nobody wants to be a doctors first patient, but someone obviously does. Yes, Doctors are humans but medicals errors are way too common. Last week there was news that medical errors would the #3 most deadly cause if it was classified as a disease, and I’m sure it’s under reported. On our part we are going to a well respected institution and trusting their policies and procedures.
Talking about unskilled medical providers, count me in the lowest rung of most under-trained group. I am now administering a chemo injection at home, 2-3 days a week. Before you start revolting and start a petition to save your dear friend from this unskilled help, let me explain the less-dramatic reality. It’s a very small, half to quarter inch, tiny little injection very similar to the one used by people who need insulin shots before meals. The nurse gave me a demo, which I recorded and have used as my study material. In spite of this judicious academic rigor, I disappointed Rachana and could not offer the same minimal-pain experience as the nurse did.
Here is a view of the medications Rachana takes each day + the injections in our fridge.
Our grocery shopping has also changed dramatically in the past few weeks. I’m reading labels more closely to see how much protein is in things; not worried about high calories and fat content and this stage. I’m trying to buy organic as much as possible, which I personally think is an overkill is some situations but this is not the time to second guess anything. Although there have been enough studies suggesting that there is no difference in the nutritional value of organic of non-organic food, for Rachana it’s more about food safety and avoiding residual pesticides is probably a good thing. But aren’t pesticides used to kill insects and make food safer, especially if you can wash things nicely? I guess pesticides gets inside the food so washing doesn’t help, but what about safety concerns when not using enough pesticides? This is way above what my brain can handle, I’m buying organic for now. But it’s the milk that gets me; I don’t know if I should ask the store why the store branded milk is suspiciously cheap or rather why organic milk has to be 3-4 times more? Don’t bother, I’m already swiping my card.