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.
Life Lately
Ever since we returned home from vacation, life has been out-of-control crazy busy. It's all good stuff (minus the two days a week of chemo), but we've all been running in different directions, trying to get to baseball games, riding lessons, gymnastics, piano lessons, and everything else in between. It's hard to believe that April is almost over!
Here's a little bit of what's been going on...
First Grade Music
Doctors
We seem to be plagued with some mystery ailments around here lately and have been spending lots of time in doctors' offices (in addition to my multiple weekly appointments). Poor Anna has been struggling with some low-energy symptoms and had to go through a very not-so-fun day of tests. Lots of blood draws, and a couple of them didn't go so well. Poor thing. Hard for this mama to watch. We're still trying to chase down the culprit and get her feeling like herself again. And Olivia is battling fairly frequent migraines (a problem she shares with her sister and her Nana), so we're working on finding the right medication for her. Hopefully both will get some relief soon.
Some sweet friends have gotten together and organized a stem cell donor drive at the kids' elementary school tomorrow. My friend, Keri, is spearheading the effort and we're hoping to get a great turnout. Through this journey, we've been made aware of the thousands of patients who are looking for bone marrow or stem cell donors. This awareness makes me want to see something good come out of this horrible situation. I truly believe that with every "bad," there comes some good. And I'm hoping that this small effort will result in a lot of good. We're working with Be The Match, an organization that manages the largest marrow/cell donor registry in the country. The goal is to get people to join the registry--people who are committed to donating bone marrow or stem cells should they be determined to be a match for a patient in need. I think this process can be a bit scary for those who don't have a lot of education or information about the process, but I'm hoping that those who come will have open minds and kind, giving hearts. The process to join is very simple--just an easy cheek swab. And the actual donation process differs, depending on whether or not the donation is marrow or cells. But in both cases, with a little time commitment and some very temporary discomfort, a life is saved. The chances of finding my donor in my little town of Maple Valley are extremely remote (although stranger things have happened!), so the goal isn't necessarily to find my donor, it's to raise awareness and stimulate the registry with a bunch of new potential donors. I'm looking forward to seeing everyone who joins us tomorrow.
Here's a little bit of what's been going on...
Baseball
If you can't find us between now and late May, chances are that we're at the ball field. The boys have three games a week (Philip is coaching Will's team), so the girls and I are getting good at making ourselves comfortable on the bleachers, cheering on our Crimson Knights. I plan to take some pictures at each game, but always forget. I have a few not-so-great ones of Will on the pitching mound. He's doing great this year--he's had some power hits this past week and some great pitching innings. The Knights don't have a stellar record right this second, but the season is young.
First Grade Music
Anna's class had their music program the other night. It's always so fun to see the entire class perform. No big surprise that she's among the tallest in her class and got to stand on the highest riser. And the best part? Ice cream with her BFFs after the concert.
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| Ready to sign their hearts out. |
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| Dessert with Haley and Gracie. |
Doctors
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| Trying to stay entertained while feeling not-so-good during a five-hour day of testing. She was a trooper! |
A Girl and Her Horse
Olivia takes riding lessons each week with her horse (not ours--she gets to borrow him every week). She's been riding a beautiful horse named Tristan for several months, but tonight she graduated to a bigger horse, Premoe. She started riding almost a year ago and absolutely loves it. It's so much fun to see the progress she's making. I think her weekly riding time is very therapeutic for her. I was never a big horse person growing up (unlike most girls, I think), but she is passionate about them. I'm grateful that she's found something that makes her heart happy and that she looks forward to every week. And I've promised her that we will never, ever buy her a horse. I'm still trying to wiggle my way out of promising her a dog. And I'm failing. |
| Olivia and Premoe. |
Leavenworth
With our busy days and very little family time these past two weeks, we decided to carve out a day to spend together. We've wanted to visit Leavenworth for years now, and finally decided it was time. Last Sunday we piled in the car and took a day trip. It was a gorgeous day, and we were there in two hours. Such a pretty drive. And I was amazed at the scenery once we got there. This little German-esque town, sitting at the bottom of snow-capped mountains. It truly felt like we had traveled to Bavaria. Leavenworth is a darling town. We spent the day walking up and down the main drag, visiting pretty much every shop there was. Actually, we ate our way through town. We hit the cheese shop, the oil and vinegar shop, the candy store, the ice cream store, the sauce/jelly store (and yes, samples were consumed in each and every one). Philip and I managed to sneak in some wine tasting while we made the kids sit and wait for us (is that bad?) and came home with a fabulous bottle of red. We traipsed through multiple souvenir shops, and even found a store that Olivia hunted down that told us the meaning of our family name (a very German name, mind you). Schmitt means blacksmith. Who knew? We ate lunch at a little bistro--Olivia and I stuck to the theme and had schnitzel and spaetzle. Delicious! It was a perfect day. The kids loved it and can't wait to go back. We're thinking maybe a winter trip next time, to see it decorated for Christmas and maybe get a snow fix. It was a fabulous family day, and we enjoyed some much needed time together. |
| Gorgeous! |
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| My babies. |
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| Enjoying dessert on the town square. |
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| The kids think we should move there. Apparently they liked it. |
Health Update
I continue to get my weekly chemo treatments. Today I finished my second round and now get to enjoy a recovery week. I still have to go back in tomorrow for my transplant intake appointment. They're getting the ball rolling on my transplant and I'm hoping to learn more about the donor status. I'm still feeling really good, which I don't take for granted. I know that it is not typical to feel this good while going through chemo. I'm so grateful for these drugs. Not only are they allowing me to maintain my quality of life, but they're killing my cancer. How blessed am I?? I should have updated blood results in the next couple of days and we're hoping to see even more improvement in my myeloma markers. My hand tremor has returned, and they're taking that very seriously. But at this point, I don't want to make any changes. I'm guessing the tremor will decrease during my week off--it seems to be very responsive to the chemo drug. While on chemo, it flares up; while off treatment, it settles down. It's not terribly impairing--I have a little trouble writing sometimes, and Anna wanted me to paint her toes the other day which was a fail, but I can manage most things just fine. The priority is to kill the cancer. And that's what we're doing.Some sweet friends have gotten together and organized a stem cell donor drive at the kids' elementary school tomorrow. My friend, Keri, is spearheading the effort and we're hoping to get a great turnout. Through this journey, we've been made aware of the thousands of patients who are looking for bone marrow or stem cell donors. This awareness makes me want to see something good come out of this horrible situation. I truly believe that with every "bad," there comes some good. And I'm hoping that this small effort will result in a lot of good. We're working with Be The Match, an organization that manages the largest marrow/cell donor registry in the country. The goal is to get people to join the registry--people who are committed to donating bone marrow or stem cells should they be determined to be a match for a patient in need. I think this process can be a bit scary for those who don't have a lot of education or information about the process, but I'm hoping that those who come will have open minds and kind, giving hearts. The process to join is very simple--just an easy cheek swab. And the actual donation process differs, depending on whether or not the donation is marrow or cells. But in both cases, with a little time commitment and some very temporary discomfort, a life is saved. The chances of finding my donor in my little town of Maple Valley are extremely remote (although stranger things have happened!), so the goal isn't necessarily to find my donor, it's to raise awareness and stimulate the registry with a bunch of new potential donors. I'm looking forward to seeing everyone who joins us tomorrow.
Vacation Recap
Spring Break 2016 is in the books, and it was one to remember. I honestly feel that this Palm Springs vacation was our best one yet. Maybe it's because I wasn't able to travel last year, so I had a greater appreciation this year. Or maybe it's because traveling with our kids has gotten so much easier over the years. After spending many vacations standing in the pool catching jumping kids, carrying them in and out of the pool, dealing with floaties and rings, it's a whole new world now that we have three kids who are strong swimmers and can take care of themselves in the water. Or maybe it's just that I felt more "in the moment" this year, and tried to enjoy and absorb every minute of this treasured family time that I could. I have to admit, as much as I try to fight the "bad thoughts", they still managed to crawl into my brain every so often. Will I be healthy enough to travel next April? Will I even be here next April? Is this the last time I'll be able to share this tradition with my kids? While I can't always control these thoughts, I'm smart enough to know to shut them down quickly. I don't have the answers to these questions, but I know that there's nothing to gain by worrying about them. My goal these days is to stay in the moment, and to not look too far forward. Easier said than done, at times, but very important to remember.
We thoroughly enjoyed our week with my parents. The kids swam daily--Anna became a professional mermaid with her new tail that my parents got for her. Lots of football-catching, cannon-balls, a little Marco Polo (until the adults shut it down due to the annoyance factor), night swims, and hot-tubbing. Poppi spent some time in the pool with the kids which is always a favorite.
We hit up our usual spots. On Sunday morning, we headed to the College of the Desert street fair to wander the shops. I like to go check out the jewelry, sunglasses and kitchen gadgets. The kids like to go for one reason, and one reason only--the freshly-made donuts with maple glaze and cinnamon sugar.
We made the tour of our favorite restaurants--Ruby's Diner, Las Casuelas Mexican restaurant, and our annual pilgrimage to In 'N Out. Philip and I managed to squeeze in a date night and had an amazing dinner at the Ritz-Carlton.
We spent one day at the Wet & Wild water park. William went down just about every slide there was--even the huge 7-story vertical slide. No thank you. He survived to tell the tale, so all was good.
On our last day, we went on a little hike in Indian Canyon. Beautiful desert views, some small falls to explore, and groves of palm trees.
Philip and I took Olivia out for a "drink" at one of the hot-spots in town one evening. She was very amused when the waiter brought her a real margarita rather than a non-alcoholic one. She's 12. I know she looks older than her age, but really??
We thoroughly enjoyed our week with my parents. The kids swam daily--Anna became a professional mermaid with her new tail that my parents got for her. Lots of football-catching, cannon-balls, a little Marco Polo (until the adults shut it down due to the annoyance factor), night swims, and hot-tubbing. Poppi spent some time in the pool with the kids which is always a favorite.
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| At the airport, ready for vacation to begin! |
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| Our little mermaid. |
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| Poppi and his kids. |
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| Donuts! |
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| Dinner at the Fish Market & Grill. |
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| Mexican food (and margaritas) tradition at Las Casuelas. |
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| Our annual In 'n Out fix--when will they open in Seattle????? |
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| The kids' favorite--burgers at Ruby's, and our annual photo with Sonny Bono. |
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| Water park! |
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| Walking to Starbucks for some pre-hike sustenance. |
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| The falls at Indian Canyon. |
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| Olivia and her non-alcoholic cocktail. |
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| But then I saw this photo and realized that she does look all grown up! Where did my baby go??? |
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| Having fun on Palm Canyon Drive. |
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| Mom and I escaped one afternoon for lunch and shopping. |
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| Early morning flight back home. Farewell, Palm Springs. |
It was a fabulous week, and many memories were made. The kids are very sad that they have to wait 365 days until they can return. And I am, too. But we're back to reality and looking forward to fun times ahead.
On the health front...
I'm not going to lie...this week has been tough. It's always difficult to come back from a wonderful vacation (I'll recap our fun spring break trip tomorrow), but we flew home last Sunday, and then I was back in my chemo room bright and early Monday morning. Rough transition! I started my second round with infusions on Monday and Tuesday, and have been feeling the effects since then, which is to be expected. My sweet friend Bobbi went to chemo with me on Monday and kept me company (I figured Philip could use a day in the office after being on vacation for a week). Philip joined me on Tuesday because we met with my doctor that morning to map out the next steps (more on that in a minute). Fortunately, my chemo appointments are a bit more streamlined this round. Last month, when I started these two new drugs (carfizolmib and pomalidomide), they started me a bit conservatively. The carfizolmib is my infusion drug, and I take pomalidomide orally each night. The infusion takes only thirty minutes, but they were adding pre/post hydration for two hours. I would get a bag of fluids for one hour, then the infusion, followed by another hour of fluids. While I wasn't crazy about having to be there for 3+ hours, I was very surprised and grateful that I tolerated the chemo so well. The hydration is primarily used to help the kidneys, but it can also help with general tolerance. When I started this new round on Monday, I found out that they removed the hydration and increased my dosage (because I didn't have any problems/side-effects last time), so I knew that this week may be a bit different. The up side is that my appointments are fairly quick. The downside is that, while I'm not feeling horrible, I'm certainly feeling like I'm getting chemo. Tired, not a lot of energy, and maybe a wee-bit cranky. But, I'm glad they bumped up my dosage--I want to blast those cells with everything we've got.
In the last month, we've been working on figuring out the next steps. I made a doctor change that was unexpected but gives me a lot of reassurance that I'm in the right place. My original doctor was traveling during March, so she connected me to Dr. Libby, a multiple myeloma physician, in her absence. We met with Dr. Libby as I started this chemo protocol in early March, and as soon as we were done with our meeting, I told Philip that I wanted to make a switch. I had absolutely no problems with my first doctor--she's the one who diagnosed me a year ago and has worked hard on my case. But, I just liked the way Dr. Libby communicated with us, liked his approach, appreciated his directness. I let him know my wish to make a change, and it was a seamless transition. My original doctor called me to follow up--she's happy that I'm happy, and will stay "in the loop" as needed. I was impressed and grateful that they made the process a comfortable one.
As far as my treatment plan goes, we've been looking at various options. An allogeneic (donor) transplant is the obvious choice at this point, and the donor search continues. But we've also been exploring CAR T-cell immunotherapy, which is a very new experimental therapy for myeloma. It's been used primarily for leukemia and lymphoma up to this point, but there are a few studies for myeloma around the country (NIH, Dana Farber, and MD Anderson). It's less invasive/risky than a transplant, and is showing promising results. In a nutshell, they take out t-cells (a specific white cell), and they alter them in the lab (they make them "bionic"). They infuse them back into the patient, where they're trained to attack the cancer cells. That's my very elementary understanding of the process, and probably not exactly how a physician would describe it. But, you get the gist. My doctor has been doing some research as to how to get me into one of these studies, as this is something I'd like to try before heading to transplant. We had a few programs narrowed down this week, and he was getting ready to "sell" my case to these programs. I was ready to pack my bag and head to Bethesda, Boston, or Houston for a few weeks. But then I got the good news/bad news call. The good news--my Monday labs came back yesterday and my myeloma markers are completely normal. No cancer in my blood. That's good news. That means the chemo is working, my body is still responding to it, and although my cancer is aggressive, we're still able to control it. And that was just after one round of chemo. The bad news--because I'm now in "remission", I don't qualify for the T-cell studies. Patients have to be in active relapse, and I'm not. And my doctor doesn't want to stop chemo at this point as they're worried that the cancer would take off. So, while I'm disappointed at not being able to try this new therapy right now, I'm grateful that there's no decision to be made. I firmly believe that things happen for a reason, and in this case, I'm meant to do the transplant.
So, we move forward, waiting for a donor match. I'll continue this round of chemo, and will possibly start a new round in May if we're not close to doing the transplant. They only want me off chemo meds 2-3 weeks before transplant, so I'll keep doing what I'm doing until they find a match and we get the transplant scheduled. I got a call yesterday to schedule my transplant intake appointment (on the 27th), so they're getting the ball rolling. I'll meet with a transplant doctor to discuss the process--a lot of it will be redundant as I've been through it already, but there will be a lot of new info as a donor transplant is a different animal than an auto transplant. There will be lots of new information/procedures to digest. I'm hoping that my donor will be finalized in the near future. That's an integral part of the process, so fingers crossed that a viable, willing donor will be located.
We're comforted to know that this chemo is working, that these drugs are effective, and that my body is still responsive. We are controlling the cancer. That's huge. I've always been a control freak. I figure I've just been in training for this challenge. Control buys us time. And that's what we're after.
In the last month, we've been working on figuring out the next steps. I made a doctor change that was unexpected but gives me a lot of reassurance that I'm in the right place. My original doctor was traveling during March, so she connected me to Dr. Libby, a multiple myeloma physician, in her absence. We met with Dr. Libby as I started this chemo protocol in early March, and as soon as we were done with our meeting, I told Philip that I wanted to make a switch. I had absolutely no problems with my first doctor--she's the one who diagnosed me a year ago and has worked hard on my case. But, I just liked the way Dr. Libby communicated with us, liked his approach, appreciated his directness. I let him know my wish to make a change, and it was a seamless transition. My original doctor called me to follow up--she's happy that I'm happy, and will stay "in the loop" as needed. I was impressed and grateful that they made the process a comfortable one.
As far as my treatment plan goes, we've been looking at various options. An allogeneic (donor) transplant is the obvious choice at this point, and the donor search continues. But we've also been exploring CAR T-cell immunotherapy, which is a very new experimental therapy for myeloma. It's been used primarily for leukemia and lymphoma up to this point, but there are a few studies for myeloma around the country (NIH, Dana Farber, and MD Anderson). It's less invasive/risky than a transplant, and is showing promising results. In a nutshell, they take out t-cells (a specific white cell), and they alter them in the lab (they make them "bionic"). They infuse them back into the patient, where they're trained to attack the cancer cells. That's my very elementary understanding of the process, and probably not exactly how a physician would describe it. But, you get the gist. My doctor has been doing some research as to how to get me into one of these studies, as this is something I'd like to try before heading to transplant. We had a few programs narrowed down this week, and he was getting ready to "sell" my case to these programs. I was ready to pack my bag and head to Bethesda, Boston, or Houston for a few weeks. But then I got the good news/bad news call. The good news--my Monday labs came back yesterday and my myeloma markers are completely normal. No cancer in my blood. That's good news. That means the chemo is working, my body is still responding to it, and although my cancer is aggressive, we're still able to control it. And that was just after one round of chemo. The bad news--because I'm now in "remission", I don't qualify for the T-cell studies. Patients have to be in active relapse, and I'm not. And my doctor doesn't want to stop chemo at this point as they're worried that the cancer would take off. So, while I'm disappointed at not being able to try this new therapy right now, I'm grateful that there's no decision to be made. I firmly believe that things happen for a reason, and in this case, I'm meant to do the transplant.
So, we move forward, waiting for a donor match. I'll continue this round of chemo, and will possibly start a new round in May if we're not close to doing the transplant. They only want me off chemo meds 2-3 weeks before transplant, so I'll keep doing what I'm doing until they find a match and we get the transplant scheduled. I got a call yesterday to schedule my transplant intake appointment (on the 27th), so they're getting the ball rolling. I'll meet with a transplant doctor to discuss the process--a lot of it will be redundant as I've been through it already, but there will be a lot of new info as a donor transplant is a different animal than an auto transplant. There will be lots of new information/procedures to digest. I'm hoping that my donor will be finalized in the near future. That's an integral part of the process, so fingers crossed that a viable, willing donor will be located.
We're comforted to know that this chemo is working, that these drugs are effective, and that my body is still responsive. We are controlling the cancer. That's huge. I've always been a control freak. I figure I've just been in training for this challenge. Control buys us time. And that's what we're after.
The desert.
When I was 12 years old, my family decided to head down to Palm Springs over our spring break to visit my grandparents who were "wintering" there. Little did we know, we were starting a life-long family tradition that is still going strong. We continued to fly down to the desert every March to spend time with my grandparents, and when they aged and were unable to travel down there, my parents started spending a couple of months there every year. So, our spring breaks in Palm Springs continued. In the past 33 years, we've only missed two of our annual trips: one year, when I was in my early 20s, we opted for Hawaii instead (a true sacrifice), and last year, I was in the beginning stages of my illness/diagnosis and was unable to travel (the kids went down with my parents). So I've spent 31 spring breaks in the quiet, sleepy desert town of Palm Springs.
The trips have evolved over the years. At first, my brother and I were kids and spent countless hours in the pool playing Marco Polo. During my middle school years, we watched as Palm Springs became THE PLACE for college spring breaks in California. The town was filled with kids, riot police were on every corner, and they all provided great people-watching opportunities. As we got older, we brought friends into the mix. My senior year of high school, I flew down with three of my best friends and we got to stay in a hotel and do our own thing (my parents were only five minutes away and for some reason, trusted us to make good decisions). Eventually, there were a few boyfriends who made the cut and joined our family vacations over the years (until I met the right one, and he still gets to come with us).
We were in Palm Springs 23 years ago when we got the 2am call that they had procured a liver for my dad, who had been on the transplant waiting list for nine months. We quickly packed, headed to the airport, jumped on a private plane sent by a friend, and went straight to OHSU where he underwent a life-saving surgery. That particular vacation was cut very short, but for a very good reason. And it's a day we continue to celebrate every year.
Now, we get to take our kids to the desert every year. And they count the days/minutes/seconds until we board that plane. We get to do the same things my brother and I grew up doing. Swimming (lots!), walking up and down Palm Canyon Drive, visiting our favorite restaurants and shops each year, lots of golf (real and mini), the occasional trip on the Palm Springs Tram. Flying into Palm Springs feels like we're coming home. Everything is so familiar and comfortable, and it's a place that's filled with so many cherished memories.
Today we get to hop on a plane and begin our vacation with Nana and Poppi. I am beyond grateful that my health is stable and that I'm allowed to have this week with my family. I don't take that for granted. We have many more memories to make, and we're all ready to get started.
The trips have evolved over the years. At first, my brother and I were kids and spent countless hours in the pool playing Marco Polo. During my middle school years, we watched as Palm Springs became THE PLACE for college spring breaks in California. The town was filled with kids, riot police were on every corner, and they all provided great people-watching opportunities. As we got older, we brought friends into the mix. My senior year of high school, I flew down with three of my best friends and we got to stay in a hotel and do our own thing (my parents were only five minutes away and for some reason, trusted us to make good decisions). Eventually, there were a few boyfriends who made the cut and joined our family vacations over the years (until I met the right one, and he still gets to come with us).
We were in Palm Springs 23 years ago when we got the 2am call that they had procured a liver for my dad, who had been on the transplant waiting list for nine months. We quickly packed, headed to the airport, jumped on a private plane sent by a friend, and went straight to OHSU where he underwent a life-saving surgery. That particular vacation was cut very short, but for a very good reason. And it's a day we continue to celebrate every year.
Now, we get to take our kids to the desert every year. And they count the days/minutes/seconds until we board that plane. We get to do the same things my brother and I grew up doing. Swimming (lots!), walking up and down Palm Canyon Drive, visiting our favorite restaurants and shops each year, lots of golf (real and mini), the occasional trip on the Palm Springs Tram. Flying into Palm Springs feels like we're coming home. Everything is so familiar and comfortable, and it's a place that's filled with so many cherished memories.
Olivia's first trip - March 2004.
First trip with two kids--Olivia and Will in 2006.
March 2007.
Three kids (one silly, one mad, and one cranky--quite the crew)! March 2009.
March 2011.
High Desert Museum - March 2012.
A fro-yo stop - March 2014.
Today we get to hop on a plane and begin our vacation with Nana and Poppi. I am beyond grateful that my health is stable and that I'm allowed to have this week with my family. I don't take that for granted. We have many more memories to make, and we're all ready to get started.
Life lately.
Easter
Although we've lived here in Maple Valley for 2.5 years now, we realized that this was the first Easter that we've all spent here together. Two years ago, we were lucky enough to celebrate the holiday in Palm Springs during the kids' spring break. Last year, we were in the very beginning stages of my illness/diagnosis, and I was too sick to travel. My parents ended up taking the kids down to Palm Springs, so Philip and I were here alone for Easter. This year, we finally got the chance to celebrate together and start some new traditions. On Saturday, we went to our church's Easter egg hunt. They do a fabulous job--tons of eggs/candy/prizes/treats. My kids love it! We were joined by some of our favorite neighbors, and had a lot of fun watching the kids hunt and gather. And, we had gorgeous weather--definitely an added bonus!
On Easter Sunday, the kids woke up early and sorted through their baskets, hunted for eggs outside (again, no rain!), we went to church, and enjoyed a quiet family day. My sweet friend, Bobbi, and her two girls joined us for dinner. All in all, it was a perfect family day.
Baseball
Chemo
I went in for chemo on Monday and Tuesday this week and finished up my first round of this chemo protocol. Everything went fairly smoothly--my blood platelets and counts are a bit low, but that's to be expected during each round. Everything should increase back to normal over this next week and half "recovery" period I'll have before starting up again. On Monday, Will and Anna both woke up feeling not-so-great. I'm guessing it had something to do with recovering from a very busy weekend and lots of Easter candy, but I also think that they just needed some "mama time." So, we let them come to chemo with us (with several warnings that it's a very boring, long process). They immediately perked up and were quite excited about getting to join us. And they did great. I got lots of cuddles and they were a good distraction (in between their trips to the nourishment center that's filled with all sorts of free snacks...of course, they picked out chocolate milk and chocolate pudding to balance out all of the chocolate eggs from the day before). We've gotten the process down to roughly two hours (with hydration and the chemo infusion), so it wasn't too bad.
I'm still tolerating this regimen fairly well, although today I'm starting to feel the effects. It can have a cumulative effect, so by the third week, it's not uncommon to feel it a little more substantially. I'm not feeling sick, but just very tired and worn out. Fortunately, I have plenty of time today to take it easy and give myself some rest time. I'll have blood work done on the 11th, as soon as we return from vacation, and we'll be able to see if this chemo has done its job. Nerve-wracking, for sure, but we continue to be optimistic.
