This whole week Rachana has complained about headache, neck sprains, and nausea. We had three trip to the clinic this week and each trip was a battle. Rachana lies down on the back seat but threw up in each trip. Even in the clinic she was either nauseated or actually throwing up. Each time they gave her saline through the IV and other meds to stabilize but by the time we reach home she was back to the same situation. And these issues have increasing gotten worse as the week progressed. The headache and neck sprains have been because of the chemo in the spine, during which they also draw out some spinal fluid to test for leukemia. The tests have been negative but it seems sometimes the spinal fluid leaks out from the place the needle is put, and this leak can cause an imbalance and thus the headaches. The other possibility is an actual infection in the spinal column, i.e. meningitis. On Thursday I messaged the doctor that perhaps we few days of attention in the hospital will help, they evaluated her on Friday and decided to keep her in the hospital for a few days. The doctor’s didn’t think so but wanted to eliminate the concern that this could be because of meningitis or some other infection. Their worry was the possibility of painkillers and Tylenol actually masking an infection.
On Friday after the clinic we drove to the hospital around 4 pm. It took and while for them to find a room in a suitable floor because of her susceptibility to infections. Rachana was miserable by the time we got into a room after throwing up a few times and having big headaches. They gave her some meds and took her for a spinal tap to draw some spinal fluid to test for meningitis. The night was good as they gave her steroids and a bunch of other stuff. By morning she was much better. The headache was gone and nausea was well under control. We are still waiting on some other test results but don’t expect anything wrong. They’ll give a unit of blood later tonight and perhaps send us home tomorrow or the day after. The headache seems to be back a little bit tonight. On Tuesday she has the last spinal chemo of this phase and they will also do a ‘blood patch’ procedure after that, which involves injecting some of her own blood into the spinal columns that clots and essentially seals the injection hole through which spinal fluid was possibly leaking, resulting in the headache. After next week, it’s three more weeks of phase 2 that involves chemo through the IV, which is much easier to take than spinal chemo.
Chemo, and especially her treatment plan, is pretty tough with a lot of ups and downs. This week was tough enough that Rachana asked the doctor what’ll happen if she stops the treatment now? It’s a good question especially because she is in remission and the issues she’s having is because of chemo and not the disease itself. The doctor explained that their research shows that the cancer will come back if she stops now. The goal is to keep the cancer away for 5 years and this 8 month chemo and 2 year of tablets is the best way to achieve that. So it’s a short term pain for a long term gain. That’s easy to say, difficult to see and tough to experience.
Didi has been quite busy getting trained/certified to volunteer and conduct drives for bethematch.org and help raise awareness and sign up people to be donors for patients who need a bone marrow transplant. Rachana does not need a transplant now and hopefully will not need it but there are many others for who a transplant is the only cure and you could be a potential life saver. If you haven’t registered to be a stem cell donor, please do so by following these links in USA, Canada, India or worldwide or google to find one in your country. Most of these registries are part of an international network and doctors can search for a match internationally. Also, remember that getting on the registry is just about a cheek swab. If you are a match and have to donate, you don’t have to undergo any surgery; blood is drawn and passed through a machine to extract stem cells and the blood is pumped back to you. The stem cells is what is given to the recipient during a Bone Marrow Transplant.