This has been a wild ride so far, and it's only been two days. And to be honest, there are parts that are very foggy for me, but I'll do my best to recap.
Day 0 - Transplant Day
I started the morning (Thursday) by hooking myself up to my IV pump for four hours of fluids. This was required before my radiation appointment. Around 11:30, we headed over to SCCA to prep for the appointment. I had never had radiation before, so I wasn't sure what to expect. It was actually much easier than I had expected. I had TBI--total body irradiation. This is done before transplant to attack my immune system which creates more space in my marrow for the new cells. We want my immune system to be fairly inactive so that it doesn't fight off the new donor cells. The procedure required me to lie down for about an hour with several markers on my body, and that was it. I didn't feel anything at all. No pain, no heat. It was a pretty simple procedure.
However, about an hour after we returned to the apartment, I became extremely nauseous. That's not uncommon, which is why I took an anti-nausea med before the appointment, but it apparently didn't work. I also developed a severe vise-like headache very quickly. Philip spent some time on the phone with my transplant team, and because my nausea was getting worse, they decided to send me to the hospital a bit earlier. I was scheduled to be admitted at 8pm, so we just jumped the gun a bit. I got settled in the hospital, they got me on IV nausea meds, and I napped. My cells arrived around 3:30am, and the actual transplant started quickly and was uneventful. They hooked the bag of cells up to my IV, and it took around 4 hours to complete the infusion. No problems at all. So, because the transplant didn't start until after midnight, Day 0 is actually Friday, June 17.
After that, things get a bit foggy for me. The nausea continued, I was on a lot of meds, and I slept most of the day. My parents brought the kids in for a quick visit that evening--it was great to see them. They had finished school the day before and had all sorts of exciting stories to tell us.
Day +1
Today was the first day after transplant and was a little more of the same. The goal is to get past the nausea, start to eat again (I hadn't eaten since Wednesday), and try to take some of my meds orally rather than IV. That's how I'm going to get out of the hospital. So I worked hard today at taking a few bites of anything--cereal, soup, toast. Just had to get something in my stomach, even though I have absolutely no appetite. I slept a lot, worked on my meds--by tonight, I've been able to take all meds orally. And no vomiting today. That's big. We got another visit from the kids--love seeing their sweet faces. Truly, my reminder as to why I'm going through all of this. To be honest, these days are numbingly boring, but I know they're important steps considering everything that is going on in my body with the new cells taking over. I just try visualizing them attacking those cancer cells and obliterating them. Over and over again.
My plan tomorrow is to BEG to get out of the hospital. I think I've met my goals, so we should good. It'll be nice to get back to the apartment where I can walk around without an IV pole and have a better bed (and no nurses waking me up during the night). But this is a good place to be when you need this type of care. My nurses have been excellent and so kind. Still, I'd rather be back to our own place as soon as possible.
It's crazy to think that after all of the planning, and the many, many appointments, tests, scans, biopsies, the transplant has actually happened. Now we pray for the results we want to see.
Gratitude
Thank you. Two very small words that hardly begin to express the gratitude we feel as we look at the long list of names of friends, family, acquaintances, and even strangers, who have donated to our housing/medical fund. First of all, we are so appreciative of our dear friends, Sheridan and Ray, for convincing us that setting up a fund was an acceptable solution, and then making that happen for us. And then the response...absolutely overwhelming. It's hard for me to wrap my brain around the help and support. As difficult as it was to ask for help, it's such an incredible relief to know that we no longer have to stress about paying these housing bills. As I sit here tonight, on the eve of my transplant, my list of worries is long--my kids (how much I miss them), worried about missing their last day of school tomorrow, worried about whether or not I'll be able to keep my meds down tonight (suffering mild nausea from chemo and my new immunosuppressants that I started on Tuesday), worried about having to endure full-body radiation tomorrow, worried about how my system will respond to my donor's cells, worried about how I'll get through these next 100 long days. We have a full plate of worries, so to receive the gift of not having to worry about money right at this moment is an extraordinary blessing. Thank you.
Tomorrow is the day. It's strange, after talking about it for so long, and working through the long preparation process, that's it's finally the time. I've survived the three days of conditioning chemo with few problems (a little fatigue and nausea). Tomorrow morning, a 21 year-old woman will give up several hours of her day to go through the aphaeresis process, where they will remove her blood, sort out the stem cells, and replace the leftovers. Those cells will be hand-carried on to a plane and will arrive in Seattle around 9:30pm. The courier will then carry them to a cell lab at Fred Hutch, where they will be treated and prepared for infusion. Meanwhile, at 8pm tomorrow night, I'll be admitted to the UW Medical Center and will be prepared to receive the cells. At approximately 1:30am, the cells will arrive at the hospital and the transplant will begin. The infusion lasts approximately two hours, and there's little fanfare. It looks like a basic bag of blood that will be hooked up to my Hickman line. Not very exciting, but at the same time, so very exciting. These cells could have the power and strength to attack and kill the stubborn myeloma cells in my marrow. These cells will completely change the make-up of my body. I will inherit a brand-new immune system and blood type (after learning that my donor is 21, I joked that I'd also love to inherit her energy, metabolism, and collagen, too). We hope that this simple infusion will extend my life by many, many years. This is the beginning of a long road, but so worth every bump along the way.
Tomorrow is the day. It's strange, after talking about it for so long, and working through the long preparation process, that's it's finally the time. I've survived the three days of conditioning chemo with few problems (a little fatigue and nausea). Tomorrow morning, a 21 year-old woman will give up several hours of her day to go through the aphaeresis process, where they will remove her blood, sort out the stem cells, and replace the leftovers. Those cells will be hand-carried on to a plane and will arrive in Seattle around 9:30pm. The courier will then carry them to a cell lab at Fred Hutch, where they will be treated and prepared for infusion. Meanwhile, at 8pm tomorrow night, I'll be admitted to the UW Medical Center and will be prepared to receive the cells. At approximately 1:30am, the cells will arrive at the hospital and the transplant will begin. The infusion lasts approximately two hours, and there's little fanfare. It looks like a basic bag of blood that will be hooked up to my Hickman line. Not very exciting, but at the same time, so very exciting. These cells could have the power and strength to attack and kill the stubborn myeloma cells in my marrow. These cells will completely change the make-up of my body. I will inherit a brand-new immune system and blood type (after learning that my donor is 21, I joked that I'd also love to inherit her energy, metabolism, and collagen, too). We hope that this simple infusion will extend my life by many, many years. This is the beginning of a long road, but so worth every bump along the way.
New Digs
Yesterday was moving day. It was a very full day--we started the morning off by watching William and Anna walk in the Maple Valley Days parade. They walked with their football/cheer teams, and braved the cloudy, wet weather. I forgot to take pictures (oops!), but they had a great time, and it was fun to see so many of our friends and neighbors at the event. I love living in a small town. As part of the event, there's a kids' art show. Anna was one of three second graders at her school to be chosen to have her art displayed, so we definitely had to go view her masterpiece. She was so proud!
After we celebrated Maple Valley Days, we quickly packed up and headed into Seattle. We found out just a few days ago that an apartment opened up at the Pete Gross House, which is where we lived last time. We thought we'd have a few more weeks on the waiting list, but fortunately, we got a unit just in time. So now we just have to move once, which is a relief. We have a corner apartment on the top floor, with a view of Lake Union. It's more spacious than our last apartment, and it's nice and bright. And, it's just a 2-3 minute drive to the SCCA.
It didn't take too long for up to unload and get things organized. We had lots of little helpers. Anna has been making me pieces of artwork to decorate our place, so she was busy hanging them up for me. I had each of the kids give me something special of theirs so that I can have reminders of them--I got two stuffed animals and a baseball. Love them. We're settled and mostly comfortable, and ready to get this show on the road.
We all went out to dinner in Seattle last night before my parents took the kids home. The kids are doing really well with all of this so far. There were some tears last night, but I'm hopeful that new routines will kick in, school will shortly be out, and they'll be able to manage these strange circumstances. I know there will be many bumps in the road for them, emotionally, and that's to be expected. But, they have a lot to look forward to this summer, so I think they'll be distracted and having fun.
We were at SCCA early this morning to start Day #1 of my chemo conditioning. I had a thirty minute infusion, so it was a fairly quick appointment. I'll have three doses of this chemo before transplant, and fortunately, it sounds like this chemo drug is well tolerated. They did give me some anti-nausea meds beforehand, just in case, but I'm not expecting to feel too poorly. I got my Hickman line put in last week, so now my labs and chemo no longer require any needle pokes. That's the only upside to having a line. I'm still trying to get used to the two tubes/leads coming out of my chest. My chest is still a bit sore from the surgery, but I'm slowly becoming accustomed to it once again. Showering is a challenge, but I've discovered that Glad Press 'n Seal works very well to keep my line dry. You do this long enough and you get to learn all sorts of tricks.
We're going to enjoy an appointment-free afternoon, and gear up for more chemo tomorrow. And, I get a visit with my kids today. One day closer to Transplant Day!
For those of you who have asked, here is our new address for the next 3.5 months:
525 Minor Ave N, #614
Seattle, WA 98109
Just like last time, no flowers are allowed. But we will be able to receive mail:)
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| Showing off her artwork. So excited!! |
After we celebrated Maple Valley Days, we quickly packed up and headed into Seattle. We found out just a few days ago that an apartment opened up at the Pete Gross House, which is where we lived last time. We thought we'd have a few more weeks on the waiting list, but fortunately, we got a unit just in time. So now we just have to move once, which is a relief. We have a corner apartment on the top floor, with a view of Lake Union. It's more spacious than our last apartment, and it's nice and bright. And, it's just a 2-3 minute drive to the SCCA.
It didn't take too long for up to unload and get things organized. We had lots of little helpers. Anna has been making me pieces of artwork to decorate our place, so she was busy hanging them up for me. I had each of the kids give me something special of theirs so that I can have reminders of them--I got two stuffed animals and a baseball. Love them. We're settled and mostly comfortable, and ready to get this show on the road.
We all went out to dinner in Seattle last night before my parents took the kids home. The kids are doing really well with all of this so far. There were some tears last night, but I'm hopeful that new routines will kick in, school will shortly be out, and they'll be able to manage these strange circumstances. I know there will be many bumps in the road for them, emotionally, and that's to be expected. But, they have a lot to look forward to this summer, so I think they'll be distracted and having fun.
We were at SCCA early this morning to start Day #1 of my chemo conditioning. I had a thirty minute infusion, so it was a fairly quick appointment. I'll have three doses of this chemo before transplant, and fortunately, it sounds like this chemo drug is well tolerated. They did give me some anti-nausea meds beforehand, just in case, but I'm not expecting to feel too poorly. I got my Hickman line put in last week, so now my labs and chemo no longer require any needle pokes. That's the only upside to having a line. I'm still trying to get used to the two tubes/leads coming out of my chest. My chest is still a bit sore from the surgery, but I'm slowly becoming accustomed to it once again. Showering is a challenge, but I've discovered that Glad Press 'n Seal works very well to keep my line dry. You do this long enough and you get to learn all sorts of tricks.
We're going to enjoy an appointment-free afternoon, and gear up for more chemo tomorrow. And, I get a visit with my kids today. One day closer to Transplant Day!
For those of you who have asked, here is our new address for the next 3.5 months:
525 Minor Ave N, #614
Seattle, WA 98109
Just like last time, no flowers are allowed. But we will be able to receive mail:)
Asking for help
I'm not good at asking for help. Never have been, and probably never will be. I also, along with most, I presume, don't enjoy talking about money. So, put the two together and I'm very uncomfortable.
Philip and I have managed, over the past 16 years, to meet our financial obligations. With a few hiccups in our early married years, we've been able to make ends meet fairly well. He earns a very good income that has allowed me to stay home with our kids for the last 13 years, and we've been able to live comfortably. While we certainly aren't living on "easy street," we've been able to pay our bills, fund the countless fees for our kids' many sports and activities, and enjoy a vacation every year. We've also been the beneficiaries of my wonderfully generous parents who have helped out when needed, taken us on many fantastic vacations, and frequently gift the kids with the things they "need." We also consider ourselves extremely blessed to have good health insurance coverage. Our insurance company has paid every single claim we've submitted since my diagnosis, no questions asked. But of course, they don't cover 100% of these costs. We've been able, up until now, to pay our portion (or set up payment plans that we will eventually pay off). It's been a juggling act, trying to make ends meet through this 14-month journey. But we've been able to do it while keeping the roof over our heads. It goes without saying that we've been able to see, first hand, just how devastating cancer can be to a family's financial security.
With the recent news that Philip's firm is transitioning to a new insurance company in a few weeks, we've been spending countless hours trying to assess the effects on my coverage. While the actual benefits are quite similar to our former plan, the costs will be higher. And, most important for us right now, they will not cover transplant-related housing. I so wish that housing wasn't required. I'd much prefer to be able to stay at home and recover with my family. But, because of our distance to the UW Medical Center, it is an absolute requirement that I live in the city, no exceptions (believe me, I've tried!). Our former insurance company granted us a generous housing allowance that would cover most of our lodging costs. But that has now changed, and we are looking at having to fund over $10,000 for housing for the next 100 days. With our moving day just days away, this has caused significant stress.
Friends have offered, from time to time, to set up a Go Fund Me account since my diagnosis. We've politely declined because we felt that this was our responsibility, and that with our insurance coverage, we'd be able to sufficiently cover our medical costs. However, we now have to set our pride aside, and ask for help. It's not easy. Sleep has been lost over this. But I have to remind myself that the most important task at hand for us right now, beyond all else, is for me to exhaust any and every opportunity to extend my time here on this earth. This transplant, while certainly not a guarantee of a successful remission, is my best chance at a few more years before we need to look towards the next treatment plan. There are so many incredible therapies that are emerging on the myeloma front (many being studied and tested right here in Seattle)--I'm very optimistic that we'll have more and better options for treatment down the road. The trick is to stay alive long enough so that I can potentially benefit from them. That's my mission. I don't want to leave my kids motherless while they're in elementary school. Or middle school. Or even high school. The goal is to beat the statistics and odds; to take advantage of every treatment and myeloma therapy that I can possibly get my hands on. I will do just about anything for more time. Including asking for help.
We are so very grateful for our friends that set this fund up, and for each and every one of you who feel compelled to help us in this fight (click on link below to view the fund site). The generosity of others is staggering. I never thought I'd have to be on the receiving end of a fund like this. But here we are, doing the best we can. And we certainly couldn't do it without the help of all of you. From the bottom of our hearts, thank you.
Karen's GoFundMe page
Philip and I have managed, over the past 16 years, to meet our financial obligations. With a few hiccups in our early married years, we've been able to make ends meet fairly well. He earns a very good income that has allowed me to stay home with our kids for the last 13 years, and we've been able to live comfortably. While we certainly aren't living on "easy street," we've been able to pay our bills, fund the countless fees for our kids' many sports and activities, and enjoy a vacation every year. We've also been the beneficiaries of my wonderfully generous parents who have helped out when needed, taken us on many fantastic vacations, and frequently gift the kids with the things they "need." We also consider ourselves extremely blessed to have good health insurance coverage. Our insurance company has paid every single claim we've submitted since my diagnosis, no questions asked. But of course, they don't cover 100% of these costs. We've been able, up until now, to pay our portion (or set up payment plans that we will eventually pay off). It's been a juggling act, trying to make ends meet through this 14-month journey. But we've been able to do it while keeping the roof over our heads. It goes without saying that we've been able to see, first hand, just how devastating cancer can be to a family's financial security.
With the recent news that Philip's firm is transitioning to a new insurance company in a few weeks, we've been spending countless hours trying to assess the effects on my coverage. While the actual benefits are quite similar to our former plan, the costs will be higher. And, most important for us right now, they will not cover transplant-related housing. I so wish that housing wasn't required. I'd much prefer to be able to stay at home and recover with my family. But, because of our distance to the UW Medical Center, it is an absolute requirement that I live in the city, no exceptions (believe me, I've tried!). Our former insurance company granted us a generous housing allowance that would cover most of our lodging costs. But that has now changed, and we are looking at having to fund over $10,000 for housing for the next 100 days. With our moving day just days away, this has caused significant stress.
Friends have offered, from time to time, to set up a Go Fund Me account since my diagnosis. We've politely declined because we felt that this was our responsibility, and that with our insurance coverage, we'd be able to sufficiently cover our medical costs. However, we now have to set our pride aside, and ask for help. It's not easy. Sleep has been lost over this. But I have to remind myself that the most important task at hand for us right now, beyond all else, is for me to exhaust any and every opportunity to extend my time here on this earth. This transplant, while certainly not a guarantee of a successful remission, is my best chance at a few more years before we need to look towards the next treatment plan. There are so many incredible therapies that are emerging on the myeloma front (many being studied and tested right here in Seattle)--I'm very optimistic that we'll have more and better options for treatment down the road. The trick is to stay alive long enough so that I can potentially benefit from them. That's my mission. I don't want to leave my kids motherless while they're in elementary school. Or middle school. Or even high school. The goal is to beat the statistics and odds; to take advantage of every treatment and myeloma therapy that I can possibly get my hands on. I will do just about anything for more time. Including asking for help.
We are so very grateful for our friends that set this fund up, and for each and every one of you who feel compelled to help us in this fight (click on link below to view the fund site). The generosity of others is staggering. I never thought I'd have to be on the receiving end of a fund like this. But here we are, doing the best we can. And we certainly couldn't do it without the help of all of you. From the bottom of our hearts, thank you.
Karen's GoFundMe page
On the road to transplant.
Somewhere within this country, a very generous woman is getting ready to start a series of injections this week that will prepare her body to donate millions of stem cells. These cells will then be put on a plane, flown to Seattle, and transfused to me on Thursday, June 16th. I don't know much about her yet--only that she lives in the U.S. and has a blood type of A+, which will become my new blood type after transplant (I'm currently O+). I also know that she is beyond benevolent to give her time and energy (and blood) to help me extend my life. It's hard to put into words how grateful I am that she, along with the many other stem cell/bone marrow donors, are so willing to help those of us who desperately need it.
I've spent the past two weeks going through my extensive pre-transplant work-up. I've had just about every x-ray, scan, MRI and blood test possible. They've tested all of my systems: heart, lungs, liver, kidneys, bones, teeth--you name it, they've looked at it. Plus, meetings with nutritionists, nurses, pharmacists and doctors. I have to say, they are extremely thorough. Fortunately, everything has checked out well and there are no concerns.
This week holds more of the same. We have my final data review with my transplant doctor on Monday to go over the aforementioned tests; I have surgery on Tuesday to remove my chemo port and "install" my Hickman central line that will be a part of me for the next 3.5 months. I'm not at all looking forward to having a line again--it's not terribly comfortable, and makes taking a shower a huge annoyance. The rest of the week will be spent learning about my conditioning chemo and radiation that will begin next weekend. Next Sunday, they'll start my three days of chemo, Wednesday will be a "rest" day, and then on Thursday (the 16th) I'll get a dose of full-body radiation, followed by the transplant later that day.
We will be moving into our Seattle apartment next Saturday. We're on the waiting list at the Pete Gross building, which is where we lived last September/October. We're hoping an apartment becomes available soon, but in the meantime, we'll be staying at the SCCA House. Their apartments are much smaller and not as self-contained as Pete Gross, but it will serve it's purpose until we can move to a more long-term apartment. Both complexes are designed for SCCA patients, and are a very short distance from SCCA, which is where I'll be spending a lot of my time.
Surprisingly, the transplant is considered an out-patient procedure. Half of their transplant patients get through the process without any hospital time, which is encouraging. Last time, I ended up in the hospital immediately following my conditioning treatment (before the transplant actually happened) because the chemo made me so violently ill. This time, my conditioning chemo is much more gentle and shouldn't cause me problems. Hopefully I'll be able to get through the first couple of weeks out-patient. Once the donor cells start doing their job, they may start to cause some problems for me. If I spike a fever, or have any severe graft vs. host (GVHD) issues, they'll admit me to UW Medical Center. This process will be a lot different than last time, and there's just no way of knowing what issues may arise over the next few months. They do a great job of educating us and informing us of the possible outcomes, but we'll just have to see what we're dealing with.
On the home front, things are going great. My parents are here for the duration, the kids are busy with end-of-the-year school activities, and they're making their summer plans. I know it'll be tough when Philip and I leave next weekend, but I also know they'll do great. We're looking forward to many visits in Seattle as I start to feel better post-transplant, and we'll all just try to take one day at a time. I'm grateful that I've been able to be here these past couple of weeks to enjoy school BBQs, carnivals, field trips, open houses and all of the other fun stuff that has been happening. It's a fun time of the year, and we're lucky to be able to enjoy it together.
I've spent the past two weeks going through my extensive pre-transplant work-up. I've had just about every x-ray, scan, MRI and blood test possible. They've tested all of my systems: heart, lungs, liver, kidneys, bones, teeth--you name it, they've looked at it. Plus, meetings with nutritionists, nurses, pharmacists and doctors. I have to say, they are extremely thorough. Fortunately, everything has checked out well and there are no concerns.
This week holds more of the same. We have my final data review with my transplant doctor on Monday to go over the aforementioned tests; I have surgery on Tuesday to remove my chemo port and "install" my Hickman central line that will be a part of me for the next 3.5 months. I'm not at all looking forward to having a line again--it's not terribly comfortable, and makes taking a shower a huge annoyance. The rest of the week will be spent learning about my conditioning chemo and radiation that will begin next weekend. Next Sunday, they'll start my three days of chemo, Wednesday will be a "rest" day, and then on Thursday (the 16th) I'll get a dose of full-body radiation, followed by the transplant later that day.
We will be moving into our Seattle apartment next Saturday. We're on the waiting list at the Pete Gross building, which is where we lived last September/October. We're hoping an apartment becomes available soon, but in the meantime, we'll be staying at the SCCA House. Their apartments are much smaller and not as self-contained as Pete Gross, but it will serve it's purpose until we can move to a more long-term apartment. Both complexes are designed for SCCA patients, and are a very short distance from SCCA, which is where I'll be spending a lot of my time.
Surprisingly, the transplant is considered an out-patient procedure. Half of their transplant patients get through the process without any hospital time, which is encouraging. Last time, I ended up in the hospital immediately following my conditioning treatment (before the transplant actually happened) because the chemo made me so violently ill. This time, my conditioning chemo is much more gentle and shouldn't cause me problems. Hopefully I'll be able to get through the first couple of weeks out-patient. Once the donor cells start doing their job, they may start to cause some problems for me. If I spike a fever, or have any severe graft vs. host (GVHD) issues, they'll admit me to UW Medical Center. This process will be a lot different than last time, and there's just no way of knowing what issues may arise over the next few months. They do a great job of educating us and informing us of the possible outcomes, but we'll just have to see what we're dealing with.
On the home front, things are going great. My parents are here for the duration, the kids are busy with end-of-the-year school activities, and they're making their summer plans. I know it'll be tough when Philip and I leave next weekend, but I also know they'll do great. We're looking forward to many visits in Seattle as I start to feel better post-transplant, and we'll all just try to take one day at a time. I'm grateful that I've been able to be here these past couple of weeks to enjoy school BBQs, carnivals, field trips, open houses and all of the other fun stuff that has been happening. It's a fun time of the year, and we're lucky to be able to enjoy it together.
Starting over.
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.
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.
