I'm on Day 15 now. Because my transplant started at 11:30 pm on July 2, and ended at 4:30 am on July 3rd, I have two "Day 0's".
Engraftment usually takes place between 14 and 21 days. I have had blood tests every day in which they measure my hemoglobin, hematocrit, platelets, neutrophils, magnesium, sodium, liver and kidney enzymes. To see if I'm engrafting, the thing to watch is the neutrophils. These are the portion of the white blood cells that are your first line of defense against infection. They are supposed to be somewhere between 2.0 and 7.3 and mine have measured between 0.01 and 0.03 but have never gotten down to zero :) ! This is by design: they wiped out my existing immune system and bone marrow, so until engraftment (when the transplant marrow begins to grow and develop in my body), I have no way of producing more of the cells, because it's the marrow that has that job. However, at the same time, I'm on medication that prevents "Graft vs. Host Disease", so my immune system doesn't attack the new and foreign cells in my body. A broad term for the medication is "immunosupressant". Yep, at the same time that I'm working on growing my immune system, it is being suppressed so that I don't develop either acute or chronic consequences from the transplant. I am truly grateful for my donor and spend time each day being grateful for the marrow, the help; and imagining my body, my bones and my blood being enlivened and knowing just what to do with the new bone marrow. I like to think of my cells as being very happy and breathing a huge sigh of relief for the newness of life and energizing flood of support that have joined in harmonizing with the existing community.
While I'm waiting for engraftment, I'm supposed to be metaphorically like the "boy in the bubble". In earlier times, bone marrow transplant patients were completely isolated and nobody could come into their hospital room. They were surrounded by thick sheets of plastic and a pressurized air system and when the nurse would administer medication, only gloved hands would go through the slits in the plastic for brief amounts of time. It took me a while to realize the seriousness of my situation. I guess I can only absorb a certain amount of bad news at a time and I don't naturally default to fear of personal safety. Rick got it right away and would wipe everything down with a bleach solution several times a day and was very vigilant about my diet. For example, if I cut an avocado, I have to wash the outside of it first so that nothing living on the outside would be transferred by the knife to the part that I eat. The good news is that I can have cooked veggies and the bistro at the clinic offers salads that have been prepared with every leaf washed separately, etc. They have me take my temperature twice a day and if I get a fever during this phase, it's an automatic admit to the hospital. Which is a hospital within a hospital: SCCA has their own section on the 8th floor with very strict rules about everything, especially visitors. (If your one allowed visitor leaves the room to get a cup of coffee or something, they cannot return until the next day. No coming and going.) Anyway, since I've made it this far with no infections, I'm glad I wasn't fully aware of the gravity of things until recently.
The good news is that my medical team is still fine with me walking! I find this a little surprising, because they don't even allow plants and flowers in this "Pete Gross House", the apartment building I live in that is set up for long terms visitors at SCCA (Seattle Cancer Care Alliance). Yesterday Sol Sister and I drove to Green Lake and joined other walkers. runners and cyclists on the trail that goes around the lake. It sure is green. One of the biggest blessings for me personally is that I arrived in early June and will leave in October. This is absolutely the best time of year to be in Seattle. It's sunny and in the 70's every day. It will be in the 80's a couple of times this week, but then back to the 70's. For me, this is perfect weather: very cheery and wonderful. After the low-dose radiation, I need to be more careful than before and wear sunscreen and hats, but it's worth it.
So right now, my days consist of blood draws, meeting with my team twice a week, and getting my dressing changed once a week. I have what's called a Hickman line which is basically an external port. It comes out of my chest and has two lumens that are available for drawing blood, giving transfusions and administering IV medications. I give myself both an IV antibiotic and also magnesium in a liter of saline each day (this helps me reach my hydration goal of 2.7 liters!) The hydration goal is so high because the medications can be hard on the kidneys. And the magnesium is because one of the anti-GVHD meds depletes magnesium which can be dangerous as it's needed for muscle function, such as your heart being able to contract. After I engraft, I won't need as many blood draws (2-3X/week) and a fever would be evaluated a little differently, depending on other symptoms. The critical stage will be over, though they still don't want me going to all the events which have been cancelled anyway. When I first got here, I heard that SCCA got free tickets for their patients to go to things like museums, sporting events, opera, etc. and I was so bummed that everything was shut down. I was lamenting this to my nurse and she just shook her head and said, "We really never approved our transplant patients to go to any events with crowds." Sure enough, in the manual that was written before covid19, it says the same thing: stay away from events with crowds. I feel a little better about missing out. Though a Seahawks game in early October would be pretty awesome.
I'm in a situation where I repeatedly choose to trust God. It's been interesting because this route came with much resistance. While I've been fascinated with health and the human body for as long as I can remember, I've also really leaned into ways that are natural, energetic and holistic. I have been very critical of "cut, poison and burn" or "operate, medicate and radiate" types of treatment, and yet here I am. I'm choosing to eat from the Tree of Life rather than the other tree which is judging good/bad, right/wrong, separation etc. The Tree of Life gives life, which is my opportunity now. This is a cure, rather than an extremely expensive treatment that I would have been on for the rest of my life. This choice to choose life over judgment is the whole point of why Jesus came and the grace he offers us. I'm now typing with tears in my eyes as I realize how much I've been given, looking out my window on this beautiful morning at South Lake Union and the Google building and filled with love for Seattle.
Thanks for the prayers that I would have the kind of recovery that makes the doctors scratch their heads. They are acknowledging that I'm doing extremely well. My PA has said on two different days that I'm "crushing it", and my nurse calls me their "rock star". My big ask now is for a harmonic receiving of the new bone marrow. That my body recognize the help and is grateful and knows just what to do with it. That I get the full benefit of the new marrow with no sorrow added. I really, really, really appreciate your prayers!
Green Lake. It's really green! To be fair, most of the lake does not look like this.
Engraftment usually takes place between 14 and 21 days. I have had blood tests every day in which they measure my hemoglobin, hematocrit, platelets, neutrophils, magnesium, sodium, liver and kidney enzymes. To see if I'm engrafting, the thing to watch is the neutrophils. These are the portion of the white blood cells that are your first line of defense against infection. They are supposed to be somewhere between 2.0 and 7.3 and mine have measured between 0.01 and 0.03 but have never gotten down to zero :) ! This is by design: they wiped out my existing immune system and bone marrow, so until engraftment (when the transplant marrow begins to grow and develop in my body), I have no way of producing more of the cells, because it's the marrow that has that job. However, at the same time, I'm on medication that prevents "Graft vs. Host Disease", so my immune system doesn't attack the new and foreign cells in my body. A broad term for the medication is "immunosupressant". Yep, at the same time that I'm working on growing my immune system, it is being suppressed so that I don't develop either acute or chronic consequences from the transplant. I am truly grateful for my donor and spend time each day being grateful for the marrow, the help; and imagining my body, my bones and my blood being enlivened and knowing just what to do with the new bone marrow. I like to think of my cells as being very happy and breathing a huge sigh of relief for the newness of life and energizing flood of support that have joined in harmonizing with the existing community.
While I'm waiting for engraftment, I'm supposed to be metaphorically like the "boy in the bubble". In earlier times, bone marrow transplant patients were completely isolated and nobody could come into their hospital room. They were surrounded by thick sheets of plastic and a pressurized air system and when the nurse would administer medication, only gloved hands would go through the slits in the plastic for brief amounts of time. It took me a while to realize the seriousness of my situation. I guess I can only absorb a certain amount of bad news at a time and I don't naturally default to fear of personal safety. Rick got it right away and would wipe everything down with a bleach solution several times a day and was very vigilant about my diet. For example, if I cut an avocado, I have to wash the outside of it first so that nothing living on the outside would be transferred by the knife to the part that I eat. The good news is that I can have cooked veggies and the bistro at the clinic offers salads that have been prepared with every leaf washed separately, etc. They have me take my temperature twice a day and if I get a fever during this phase, it's an automatic admit to the hospital. Which is a hospital within a hospital: SCCA has their own section on the 8th floor with very strict rules about everything, especially visitors. (If your one allowed visitor leaves the room to get a cup of coffee or something, they cannot return until the next day. No coming and going.) Anyway, since I've made it this far with no infections, I'm glad I wasn't fully aware of the gravity of things until recently.
The good news is that my medical team is still fine with me walking! I find this a little surprising, because they don't even allow plants and flowers in this "Pete Gross House", the apartment building I live in that is set up for long terms visitors at SCCA (Seattle Cancer Care Alliance). Yesterday Sol Sister and I drove to Green Lake and joined other walkers. runners and cyclists on the trail that goes around the lake. It sure is green. One of the biggest blessings for me personally is that I arrived in early June and will leave in October. This is absolutely the best time of year to be in Seattle. It's sunny and in the 70's every day. It will be in the 80's a couple of times this week, but then back to the 70's. For me, this is perfect weather: very cheery and wonderful. After the low-dose radiation, I need to be more careful than before and wear sunscreen and hats, but it's worth it.
So right now, my days consist of blood draws, meeting with my team twice a week, and getting my dressing changed once a week. I have what's called a Hickman line which is basically an external port. It comes out of my chest and has two lumens that are available for drawing blood, giving transfusions and administering IV medications. I give myself both an IV antibiotic and also magnesium in a liter of saline each day (this helps me reach my hydration goal of 2.7 liters!) The hydration goal is so high because the medications can be hard on the kidneys. And the magnesium is because one of the anti-GVHD meds depletes magnesium which can be dangerous as it's needed for muscle function, such as your heart being able to contract. After I engraft, I won't need as many blood draws (2-3X/week) and a fever would be evaluated a little differently, depending on other symptoms. The critical stage will be over, though they still don't want me going to all the events which have been cancelled anyway. When I first got here, I heard that SCCA got free tickets for their patients to go to things like museums, sporting events, opera, etc. and I was so bummed that everything was shut down. I was lamenting this to my nurse and she just shook her head and said, "We really never approved our transplant patients to go to any events with crowds." Sure enough, in the manual that was written before covid19, it says the same thing: stay away from events with crowds. I feel a little better about missing out. Though a Seahawks game in early October would be pretty awesome.
I'm in a situation where I repeatedly choose to trust God. It's been interesting because this route came with much resistance. While I've been fascinated with health and the human body for as long as I can remember, I've also really leaned into ways that are natural, energetic and holistic. I have been very critical of "cut, poison and burn" or "operate, medicate and radiate" types of treatment, and yet here I am. I'm choosing to eat from the Tree of Life rather than the other tree which is judging good/bad, right/wrong, separation etc. The Tree of Life gives life, which is my opportunity now. This is a cure, rather than an extremely expensive treatment that I would have been on for the rest of my life. This choice to choose life over judgment is the whole point of why Jesus came and the grace he offers us. I'm now typing with tears in my eyes as I realize how much I've been given, looking out my window on this beautiful morning at South Lake Union and the Google building and filled with love for Seattle.
Thanks for the prayers that I would have the kind of recovery that makes the doctors scratch their heads. They are acknowledging that I'm doing extremely well. My PA has said on two different days that I'm "crushing it", and my nurse calls me their "rock star". My big ask now is for a harmonic receiving of the new bone marrow. That my body recognize the help and is grateful and knows just what to do with it. That I get the full benefit of the new marrow with no sorrow added. I really, really, really appreciate your prayers!
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