Today is the day we start over. Stem cell transplant, round two. I've been looking forward to getting to this point, but at the same time, dreading every single thing it means. On the "good" list--we're moving forward, hopefully heading towards a more successful treatment course. I'm being aggressive, which, from the start, has been so very important to me. I have too much to lose to NOT be aggressive. I'm receiving treatment at one of the premier medical facilities in the country, with incredible physicians and medical staff. They found a willing donor for me (not an easy task!). My amazing team of caregivers is ready for action--my parents arrived on Sunday, and are ready to take over kids/house/life management. Philip has cleared his schedule (we are blessed that his firm is so compassionate and supportive of us and our challenges). Things are lined up, and we're ready to tackle this.
On the "not so good" side is the emotional/mental side of the situation. I'm dreading the next two weeks of pre-transplant tests, scans, meetings, labs, biopsies, etc. That's hard stuff. Not necessarily physically hard (well, the biopsy isn't much fun), but it's more of a mental hard. Especially since I feel like I just went through this whole process. It's a wearying process. It's a big lead-up to a huge procedure. With constant reminders of just how risky the procedure is. I'm scared. Scared that something will go wrong. Scared that the transplant may work, but that the donor cells will wreak havoc on my body and cause other long-term, serious problems. Scared that the transplant won't work. Just scared.
I'm also struggling with leaving my kids for the summer. We knew this was coming, and we know that it's necessary. And the logistics are all in place for everything to work smoothly. The kids will be blessed to have a fun summer with Nana and Poppi. They'll get to have a few trips to Portland to visit the cousins, they'll go to Black Butte and the beach for quick get-aways, they'll make all sorts of fun memories, and will be in exceptional hands. But, I won't get to be with them. As a mom, that's beyond tough. As everyone else is counting the days until school gets out, and making fun summer plans with their families, I'm having to say good-bye to mine. This summer will be long. And hard. I'll be counting the days until I can return home in September. We'll get through it, but I can't help but be sad about all that I will be missing. Three months is a long time. I'll get to see the kids here and there for visits, depending on how compromised I am. We know the beginning few weeks will be rough, but we're hoping that once my health is stabilized, we'll get to have more frequent visits. Time will tell. And I know I'm sacrificing this summer to hopefully have many more summers with my kids. But right now, this one looms large. I'm sad, and a little bit resentful. Ok, I'm a lot resentful. Some days I just want to scream that it's not fair. It's not. But that's ok. It is what it is. And we'll get through it. And we'll try to smile and find joy. It'll be there, just not exactly how I pictured it.
Today I meet my transplant team and get the ball rolling. The rest of this week is filled with a multitude of appointments--we'll meet my attending transplant physician, have various tests (EKG, chest x-ray), lots of labs, meetings with social workers, nursers, pharmacists, and others. All important steps to get to transplant day. That's the goal. And we'll get there.
The Plan
I'm not good at waiting. Especially when I'm waiting for a plan. I've been a planner all of my life. I specifically remember studying my high school class schedule, planning how I was going to get to each class on time, sometimes coming up with alternate routes just in case my first plan didn't work (I also have a serious problem with being late to anything--it stresses me out). You can say I'm a bit Type A. I love a plan. I love to know what's coming up, and I love to be prepared for it. Since my cancer diagnosis, I've had to relinquish control over making plans. I quickly learned that I don't get to plan much of anything. The planning has turned into waiting. Waiting to be told when to be at doctors' appointments. Waiting to be given a chemo schedule. Waiting to learn if they've found a stem cell donor. Waiting for test results. Lots and lots of waiting. The waiting makes me cranky and frustrated. It makes me start to doubt the course of treatment that we've chosen. It gives me too much time to worry about what's ahead.
The past few weeks have been a waiting game--waiting to hear about my one potential donor, and waiting for a transplant time frame. In the meantime, I've continued my chemo protocol--I just started my third cycle this Monday and Tuesday. This week has been a bit harder as they increased my dosage. I'm definitely feeling the effects now. My numbers are still looking very good and stable--no cancer cells detected in my blood. They're still in there, but they're being held down by the chemo and aren't causing problems. That's great news, and exactly where we want to be as we head towards transplant.
The waiting finally came to an end yesterday when I got a call from my transplant coordinator. The ball is rolling, and once it starts, it moves quickly. I'll start my pre-transplant work-up on the 24th--this consists of two weeks of all-day, every-day procedures and tests to make sure that my body can tolerate the transplant. I'll have yet another bone marrow biopsy, full-body x-rays, cardiac/respiratory/pulmonary tests, dental exams, MRIs, and another surgery to remove my chemo port (I had a port put in my chest in early March) and replace it with a Hickman central line that I'll have for three months. All of this should be completed in early June, at which time I'll start the transplant conditioning. This involves getting a chemo infusion for three consecutive days, followed by full-body radiation, and then the actual transplant which is scheduled for June 16th (dependent on the donor being available that week). It's a lot to wrap my brain around, and will be a very busy few weeks of preparation.
In the middle of all of that, Philip and I will need to move to Seattle. Once again, we'll have to procure housing that is closer to the hospital and SCCA. Unfortunately, we live about 15 minutes too far south of the city. The requirement is that we must be able to be at the hospital in less than 30 minutes. We can generally do it in 45 (not in peak traffic), but they're very strict about this rule. This time, we'll be required to stay in Seattle for 100 days. That's a long time. I'm really struggling with having to leave my kids for that long. I'll see them, but not at home. I'll miss the entire summer with them. I'm trying hard to not dwell on this because when I do, nothing good happens. It makes me so sad to miss this time with them. My transplant is scheduled on their very last day of school. I know I have to look at this as a temporary challenge, and that by giving up one summer with them, I'm hopefully going to have many more summers with them. But that's hard to do. I know I won't get to see them every day. They'll be in great hands with Nana and Poppi, but I want to cry every time I think about not being here to tuck them into bed each night. And I do cry. There will be lots of tears. But we'll get through it.
So, we have a plan. I feel better knowing that, but it's all very overwhelming at this point. We've done this before, and I know that the key is to take one day at a time. I have my wonderful support system in place--my husband, my parents, my amazing local friends who are taking great care of us, my faraway friends who are ready to hop on a plane and come to help out whenever needed. We'll get through this, and I hope and pray that we get through this with good results this time. It's very risky, and very scary, but if there's a potential for a long remission, then we need to give this a try. I remain optimistic that this will help me get some of the years I so badly want. That's what makes it all worth it.
The past few weeks have been a waiting game--waiting to hear about my one potential donor, and waiting for a transplant time frame. In the meantime, I've continued my chemo protocol--I just started my third cycle this Monday and Tuesday. This week has been a bit harder as they increased my dosage. I'm definitely feeling the effects now. My numbers are still looking very good and stable--no cancer cells detected in my blood. They're still in there, but they're being held down by the chemo and aren't causing problems. That's great news, and exactly where we want to be as we head towards transplant.
The waiting finally came to an end yesterday when I got a call from my transplant coordinator. The ball is rolling, and once it starts, it moves quickly. I'll start my pre-transplant work-up on the 24th--this consists of two weeks of all-day, every-day procedures and tests to make sure that my body can tolerate the transplant. I'll have yet another bone marrow biopsy, full-body x-rays, cardiac/respiratory/pulmonary tests, dental exams, MRIs, and another surgery to remove my chemo port (I had a port put in my chest in early March) and replace it with a Hickman central line that I'll have for three months. All of this should be completed in early June, at which time I'll start the transplant conditioning. This involves getting a chemo infusion for three consecutive days, followed by full-body radiation, and then the actual transplant which is scheduled for June 16th (dependent on the donor being available that week). It's a lot to wrap my brain around, and will be a very busy few weeks of preparation.
In the middle of all of that, Philip and I will need to move to Seattle. Once again, we'll have to procure housing that is closer to the hospital and SCCA. Unfortunately, we live about 15 minutes too far south of the city. The requirement is that we must be able to be at the hospital in less than 30 minutes. We can generally do it in 45 (not in peak traffic), but they're very strict about this rule. This time, we'll be required to stay in Seattle for 100 days. That's a long time. I'm really struggling with having to leave my kids for that long. I'll see them, but not at home. I'll miss the entire summer with them. I'm trying hard to not dwell on this because when I do, nothing good happens. It makes me so sad to miss this time with them. My transplant is scheduled on their very last day of school. I know I have to look at this as a temporary challenge, and that by giving up one summer with them, I'm hopefully going to have many more summers with them. But that's hard to do. I know I won't get to see them every day. They'll be in great hands with Nana and Poppi, but I want to cry every time I think about not being here to tuck them into bed each night. And I do cry. There will be lots of tears. But we'll get through it.
So, we have a plan. I feel better knowing that, but it's all very overwhelming at this point. We've done this before, and I know that the key is to take one day at a time. I have my wonderful support system in place--my husband, my parents, my amazing local friends who are taking great care of us, my faraway friends who are ready to hop on a plane and come to help out whenever needed. We'll get through this, and I hope and pray that we get through this with good results this time. It's very risky, and very scary, but if there's a potential for a long remission, then we need to give this a try. I remain optimistic that this will help me get some of the years I so badly want. That's what makes it all worth it.
