It is very difficult to believe that I am now at this point in my journey. Over 4 weeks have gone by, and now we are looking into the final stretches of infusions and medication weaning.
Last night was similar to the one before, in that about 3 am I started to experience right scapular and chest pain, which seemed to continue more into the lumbar spine. Intensity wise, only a 2/10. Since I'd been through it the night before, I simply took a couple analgesics, Skyped my wife and kids at 4 am (which works perfectly for their bed time back home), then got back to bed once the pain was gone. Really a non issue. Makes it easier when you can identify it as what it is when it's happening. Interestingly, a prior HSCT patient here contacted me to tell me it was exactly the same presentation she had had. Same places, high intensity...
So what happened overnight?
Hemoglobin is at 103 from 100
Leukocytes are at 24.5 from 23.7
Platelets are at 320 from 267
Not huge jumps in the leukocytes as these should continue to normalize over the next week.
Dr. Fedorenko has checked all my blood enzymes, liver tests are all within normal limits, so now tomorrow we get to move onto the next phase of care....Rituximab.
Rituximab is not a chemotherapy drug, it is called a monoclonal antibody. These are mono specific antibodies made specifically to a certain cell. In this case, Rituximab is used as an antibody to clean up any extra or aberrant B cells that may have worked their way through the chemotherapy agents. Consider it like a safety net, to be sure no autoreactive bad guys got away through the first round.
The IV session takes somewhere around 5-6 hours and is done very slowly and controlled, The reason it is done so slowly is to be sure that the body does not have any type of allergic reactions to it. Antihistamines are administered throughout as well, so I think in the big picture, it is just going to be a long, slow day.
We have begun half dosing all steroid infusions every day and will continue to do so while being monitored through the rest of the week. As well my 'puck bag' full of broad spectrum antibiotics, etc, will start to lighten as my immune system is now at the point where it should start to carry a bit more of the load (and get learning what's right from wrong....properly!)
The day was definitely slower on the rise this am, , but in fairness, yesterday, I believe I moved more than I had in the past week combined. We were able to get out for several more (longer) walks today, followed by the necessary rest afterward. Amazing, again how the body let's you know what it can do, then says that's enough. I likely did three times the exercise today, and felt great, and needed more sleep. Each day will get better and better and the conditioning will come back as long as the limits are respected. Helps to have a mom who is a physiotherapist and calls me out on it saying 'too much, time to sit'. Every patient who has undergone this procedure, will attest to the mantra....'push too much and you set yourself back....just find that right balance of patience and perseverance!'
I look forward to a major milestone tomorrow!
Wishing you all health and healing from Moscow!!!
Last night was similar to the one before, in that about 3 am I started to experience right scapular and chest pain, which seemed to continue more into the lumbar spine. Intensity wise, only a 2/10. Since I'd been through it the night before, I simply took a couple analgesics, Skyped my wife and kids at 4 am (which works perfectly for their bed time back home), then got back to bed once the pain was gone. Really a non issue. Makes it easier when you can identify it as what it is when it's happening. Interestingly, a prior HSCT patient here contacted me to tell me it was exactly the same presentation she had had. Same places, high intensity...
So what happened overnight?
Hemoglobin is at 103 from 100
Leukocytes are at 24.5 from 23.7
Platelets are at 320 from 267
Not huge jumps in the leukocytes as these should continue to normalize over the next week.
Dr. Fedorenko has checked all my blood enzymes, liver tests are all within normal limits, so now tomorrow we get to move onto the next phase of care....Rituximab.
Rituximab is not a chemotherapy drug, it is called a monoclonal antibody. These are mono specific antibodies made specifically to a certain cell. In this case, Rituximab is used as an antibody to clean up any extra or aberrant B cells that may have worked their way through the chemotherapy agents. Consider it like a safety net, to be sure no autoreactive bad guys got away through the first round.
The IV session takes somewhere around 5-6 hours and is done very slowly and controlled, The reason it is done so slowly is to be sure that the body does not have any type of allergic reactions to it. Antihistamines are administered throughout as well, so I think in the big picture, it is just going to be a long, slow day.
We have begun half dosing all steroid infusions every day and will continue to do so while being monitored through the rest of the week. As well my 'puck bag' full of broad spectrum antibiotics, etc, will start to lighten as my immune system is now at the point where it should start to carry a bit more of the load (and get learning what's right from wrong....properly!)
The day was definitely slower on the rise this am, , but in fairness, yesterday, I believe I moved more than I had in the past week combined. We were able to get out for several more (longer) walks today, followed by the necessary rest afterward. Amazing, again how the body let's you know what it can do, then says that's enough. I likely did three times the exercise today, and felt great, and needed more sleep. Each day will get better and better and the conditioning will come back as long as the limits are respected. Helps to have a mom who is a physiotherapist and calls me out on it saying 'too much, time to sit'. Every patient who has undergone this procedure, will attest to the mantra....'push too much and you set yourself back....just find that right balance of patience and perseverance!'
I look forward to a major milestone tomorrow!
Wishing you all health and healing from Moscow!!!
