Mandy: 2
Cancer: 0
Thank you all again so very much for the incredible tidal wave of support over these last two weeks of uncertainty while we awaited more information about my lymphoma. I am extremely glad to tell you that last night, we received about the best news that a cancer patient could get.
My hematologist oncologist (the heme-onc), whom I have not even met yet (which shows what a great doctor he is going to be) called me last night at about 6:00 to deliver the results of my surgical biopsy and PET-CT scan (which only happened yesterday at noon). He said that the diagnosis is indeed Hodgkin’s lymphoma (about the only bad news in the call, really) of the nodular-sclerosing subtype (the most common subtype of HL). We caught it early and my chances of a total cure are greater than 90%. According to the CT alone, the only enlarged lymph nodes or tumors anywhere in my body are these in my neck, which would put me at Stage I. By PET scan, they might call it Stage II, because the PET scan (which basically uses a radioactive glucose to highlight cancerous cells in the body) showed some activity in my chest also. But those nodes are totally normal in size, so if they are actually cancerous, it would indicate only the very beginnings of any spread to that area. So the doctor said my prognosis is in line with Stage I Hodgkin’s with low risk (meaning I have no adverse risk factors that might indicate a poor prognosis despite early staging). So I am Stage IA (the “A” meaning that I have no systemic symptoms such as fever, night sweats, or certain blood count indicators).
Treatment for Hodgkin’s is pretty standard, and, especially with early-stage disease, very straightforward. The normal course for my stage of disease involves 2-4 cycles of chemotherapy (a regimen called ABVD; one “cycle” is four weeks long and includes two doses given at two-week intervals, so basically I’m looking at a chemo treatment every other week for 8-16 weeks), usually followed by radiation to the involved areas (for me, that would mean my neck and possibly my chest). However, radiation, especially to the chest, is associated with significantly higher risk of later cancers (particularly lung and breast cancers) for Hodgkin’s patients who survive longer than 15 years. For people like me who are diagnosed at a relatively young age, this is a pretty significant risk to consider, so I am considering a clinical trial that would replace the supplemental radiation with a promising new treatment that has shown remarkable results with relapsed Hodgkin’s and is now being tried in combination with front-line treatments. More details about that once we’ve done more investigation.
The next steps are to meet in person with my heme-onc on Monday to discuss further plans. I will also have a bone marrow biopsy that day (yikes—although I’m told that they are not nearly as bad as everyone thinks they are) just to rule out any bone marrow involvement, but given that my blood counts are totally normal, this is extremely unlikely. On Tuesday, they will conduct some baseline tests on my heart and lung function, because some of the drugs in the ABVD regimen can damage those organs. We’ll also meet with the fertility preservation specialists at Lineberger that day to discuss the relative risks of the ABVD treatment (the risk of infertility with this regimen appears to be very small, but we want to make sure we understand all of the risks and all of our options).
I’m not sure when we’ll plan to begin chemotherapy. I’m still going to see if it’s possible for me to complete my race on April 29 and start right afterward, but if there’s any concern at all about delaying treatment, of course I’ll start whenever I’m told to start. The doctor told me that starting my new job this fall shouldn’t be a problem at all. Again, totally amazing. I’ll likely be bald, but who cares?
Another win for me, I think. Big time. And now that I know for sure that this thing is very beatable, I’m ready to beat it. In fact, I’m already beating it.
Jessica and I were talking the other day about what it’s like to go through something like this so soon after a tragic loss (in 2008, her then-three-year-old son was diagnosed with Type I diabetes only ten months after her mother died suddenly from Rocky Mountain spotted fever). We both agreed that at least with a disease like this, there’s something we can do about it, a way to fight, as opposed to the utter lack of control we had over anything that happened to her mom and to Hudson.
I’ve been pretty surprised at how I’ve managed not to completely fall apart in the wake of this diagnosis. I mean, really, what are the odds of losing a parent AND a child AND being diagnosed with cancer all by age 36? It’s kind of a lot to take, don’t you think? I have certainly had a few dark moments, including the few second right after the pathologist first read the results of the needle biopsy, during which I sobbed and kept shaking my head in total disbelief, and two nights ago, before the PET scan, when I had read some discouraging stories about later-stage and relapsed Hodgkin’s and began to think too hard about the worst-case scenario of leaving my sweet Ed and Jackson far too soon. And I certainly dread spending the rest of my life getting intermittently screened and waiting for each new result, worrying whether the cancer may have come back.
But in general, and especially now that I know that the odds really are in my favor, all I keep thinking is that I have already survived the worst possible thing that could happen to me. The only thing worse that could happen now would be to lose Ed or Jackson, so in some ways, this cancer thing seems almost like a piece of cake. I know that may sound ridiculous, but that’s how I feel. Of course, I know that treatment is going to be unimaginably awful, but really, could it EVER be worse than the many dark months I spent after Hudson died? Never. It could never be that bad. And not only that, with cancer treatment, I can actually look forward to it being over at a defined point in time, whereas with my grief, all I could ever hope for was that at some unknown time in the future, it might start to feel marginally better. No, cancer will be easy compared to that.
And above all, Hudson’s death has instilled in me a ferocious determination to beat the hell out of this cancer. Disease took her life from her decades and decades too soon. I resolved when she died that I had to live well enough and big enough for the both of us. I’ll be damned if I’m going to let another disease rob her, and our family, again.
So to recap, the score is:
Mandy: 2
Cancer: 0
With the help of all of you, the members of what I am now calling my “Screw Cancer Posse,” I am looking forward to a total shutout.
Wednesday, April 11, 2012
Friday, April 6, 2012
First Battle
Mandy: 1
Cancer: 0
At least, that’s what I think. I had my surgical biopsy this morning, where a surgeon removed one of my swollen lymph nodes and sent it to hematopathology in order to confirm my diagnosis and determine which subtype of Hodgkin’s I have. (Just in case anyone wants to know or is confused, surgery is NOT part of treatment of lymphoma like it sometimes is with other cancers. Lymphoma is a blood cancer, so the whole system has to be treated, rather than just the tumors.)
Everything went smoothly, and I feel fine with the exception of a lot of soreness in my neck, both in the muscles and the incision. I will have a nice, long scar, a lot longer than I thought. They went for the biggest node (5 cm, which is pretty big in the world of lymph nodes—abnormal is anything over 1 cm). It was kind of hiding under my sternocleidomastoid muscle (the big muscle that runs down the side of your neck from behind your ear to your collarbone), so the incision is about 3-4 inches long and the whole side of my neck hurts. You don’t realize how much you use that muscle until it’s injured—you use it to eat, to laugh, to hold the phone without your hands, to turn your head from side to side. You use it a LOT. But I have a nice Percocet prescription that I’ll use probably only through tomorrow, and then I’ll switch to ibuprofen. I have absorbable sutures, so I won’t have to “get the stitches out”—they’ll dissolve on their own, which is a plus.
Other than the pain, the only major downside of the surgery is that not only did the doctor forbid me to swim for a week (which I had expected, given the sutures), he also told me I can’t run or bike or do any other strenuous exercise, including lifting my sweet little Jackson (who is more than double the 10-pound limit I was given). The concern is not that the stitches might pull out from the strain but also the possibility of a bleed or a hematoma if I get my blood pumping too much. The no-exercise rule is really a bummer, since I only have three more weeks of training before the race, and the final week is usually a taper week anyway. So these next two weeks are peak training time, and I’ll have to miss the first one entirely. Hopefully, I’ve developed my muscles and lungs enough over the last 4.5 months that catching back up the following week won’t be too hard. And anyway, if the worst thing that happens is that I have to race a little slower than I might have otherwise (and believe me, I’m not remotely fast to start with), then so be it. I’ll still be racing with cancer, which means I’ll be giving this stupid cancer the big fat bird (and I am about to buy a t-shirt that says just that—thanks to my friend, Meredith, for telling me about stupidcancer.org, an organization for young adults with cancer). And the no-baby lifting rule REALLY sucks. You also don’t realize how often you lift your kid until you’re not allowed. Even moving him from one side to the other when nursing has the potential to strain my neck, so I have to sit him up on one of my knees and scoot him over to the other side without picking him up. And not being able to swoop him up for a snuggle or a tickle or a kiss hurts my poor heart, especially now, when all I want to do is snuggle, tickle, and kiss him as much as I can.
But all of that is only for a week, and most of the rest of the news we got today was good. First, Jackson took his first formula like a champ. We were at the hospital for 6 hours, so he got two bottles of formula during that time, and my dad said it was like he didn’t even notice it wasn’t my milk (not sure how I feel about that, but I’m glad he didn’t refuse it!). That was a major relief for me, because I’d been really concerned that he might just go on strike and not drink anything if he couldn’t have breastmilk, so that’s one thing I don’t have to worry about anymore. Also, the anesthesiologist and the post-op nurse both told me that I’d need to pump and dump my milk for at least the first feeding that day because I’d had morphine products during the surgery. The nurse even went out of her way to find a hand-held pump for me since I hadn’t brought mine down. But fortunately, someone had called a lactation consultant, and she stopped by right before I was about to leave the recovery room, and she told me that as long as I was awake, I could nurse (and she added that all moms who’ve had c-sections have had morphine products, too, and they’re still encouraged to breastfeed right away, and since Jackson is WAY older than a newborn, it would not cause him any trouble at all). So as soon as I got home, he and I settled in for a long nursing session, even though he’d just had some formula about 45 minutes before—this made me feel a little better about him apparently LIKING the formula, because he usually nurses for about 7 or 8 minutes these days, and it was clear he had really missed me and missed nursing this morning. I love that boy. Damn, it is going to be so hard to stop nursing him cold turkey in a few weeks.
But back to the good news. I had a chest x-ray before the procedure to see whether there were any masses in my chest that might compromise my airway during the anesthesia. (This was hard for me emotionally, because all I could think about was the chest x-rays Hudson had done on the day she was diagnosed. She was so very little next to those big machines.) Just before the surgery, the resident told me that the chest x-ray looked clear, which we think is good news. The x-ray doesn’t show as much detail as a CT scan will, but if there were any large masses there in my chest, they would have been visible. There may still be cancerous nodes there, but they aren’t big ones. My hope is that this means two things: one, that the cancer has not spread below my diaphragm (involvement of lymph nodes both above and below the diaphragm means the cancer has progressed to Stage 3), because the progression of Hodgkin’s is usually orderly through each lymph node site (if it started in my neck, it would have to go through my sternum before it crossed the diaphragm); and two, that I might be able to avoid radiation to my chest. The typical treatment for Hodgkin’s is a course of chemotherapy followed by radiation (there are some variations depending on stage) to the involved areas. But radiation to the chest is associated with second cancers much later in life, and since I am only 36, I’d be taking a big risk of possible development of a breast or lung cancer 20 years from now. So hopefully, either the cancer is not in my chest at all, or if it is, it’s in such small spots that it can be treated with just the chemo. I have no idea if any of this is accurate—I’m basing it only on what I have read while researching, but we’ll figure all that out soon enough. For now, it’s reason to hope, and that works for me.
They also did bloodwork today, and although I didn’t get the details (the surgeon told Ed about it while I was in recovery and I didn’t know about it until we got home, so I couldn’t ask questions), it apparently looks good. I don’t know if they did a differential (where we’d know more about my lymphocytes and other lymphoma indicators), but if it looks good, that likely means that my white blood cell count and platelet counts are normal. Elevated white blood cell count and low platelets are often signs of lymphoma, so again, my hope is that this means that we caught the cancer at an early stage and that I am going to be cured in no time.
And finally, we found out that the hematology oncology department has already scheduled me for a PET scan on Tuesday, which is great news. The PET scan will tell us more about whether the cancer has progressed and if so, where. I had thought we were going to have to wait first for the biopsy results to come back and then for a meeting with a heme-onc doctor before they would do any more tests for staging, but when I spoke to the scheduler, he said that it’s an “evolving diagnosis,” so they were fine doing it before the final pathology report.
All in all, I think it was a win for me and hopefully a good omen for the future. Again, thank you all so much for your support. I really can’t tell you how important it is.
Cancer: 0
At least, that’s what I think. I had my surgical biopsy this morning, where a surgeon removed one of my swollen lymph nodes and sent it to hematopathology in order to confirm my diagnosis and determine which subtype of Hodgkin’s I have. (Just in case anyone wants to know or is confused, surgery is NOT part of treatment of lymphoma like it sometimes is with other cancers. Lymphoma is a blood cancer, so the whole system has to be treated, rather than just the tumors.)
Everything went smoothly, and I feel fine with the exception of a lot of soreness in my neck, both in the muscles and the incision. I will have a nice, long scar, a lot longer than I thought. They went for the biggest node (5 cm, which is pretty big in the world of lymph nodes—abnormal is anything over 1 cm). It was kind of hiding under my sternocleidomastoid muscle (the big muscle that runs down the side of your neck from behind your ear to your collarbone), so the incision is about 3-4 inches long and the whole side of my neck hurts. You don’t realize how much you use that muscle until it’s injured—you use it to eat, to laugh, to hold the phone without your hands, to turn your head from side to side. You use it a LOT. But I have a nice Percocet prescription that I’ll use probably only through tomorrow, and then I’ll switch to ibuprofen. I have absorbable sutures, so I won’t have to “get the stitches out”—they’ll dissolve on their own, which is a plus.
Other than the pain, the only major downside of the surgery is that not only did the doctor forbid me to swim for a week (which I had expected, given the sutures), he also told me I can’t run or bike or do any other strenuous exercise, including lifting my sweet little Jackson (who is more than double the 10-pound limit I was given). The concern is not that the stitches might pull out from the strain but also the possibility of a bleed or a hematoma if I get my blood pumping too much. The no-exercise rule is really a bummer, since I only have three more weeks of training before the race, and the final week is usually a taper week anyway. So these next two weeks are peak training time, and I’ll have to miss the first one entirely. Hopefully, I’ve developed my muscles and lungs enough over the last 4.5 months that catching back up the following week won’t be too hard. And anyway, if the worst thing that happens is that I have to race a little slower than I might have otherwise (and believe me, I’m not remotely fast to start with), then so be it. I’ll still be racing with cancer, which means I’ll be giving this stupid cancer the big fat bird (and I am about to buy a t-shirt that says just that—thanks to my friend, Meredith, for telling me about stupidcancer.org, an organization for young adults with cancer). And the no-baby lifting rule REALLY sucks. You also don’t realize how often you lift your kid until you’re not allowed. Even moving him from one side to the other when nursing has the potential to strain my neck, so I have to sit him up on one of my knees and scoot him over to the other side without picking him up. And not being able to swoop him up for a snuggle or a tickle or a kiss hurts my poor heart, especially now, when all I want to do is snuggle, tickle, and kiss him as much as I can.
But all of that is only for a week, and most of the rest of the news we got today was good. First, Jackson took his first formula like a champ. We were at the hospital for 6 hours, so he got two bottles of formula during that time, and my dad said it was like he didn’t even notice it wasn’t my milk (not sure how I feel about that, but I’m glad he didn’t refuse it!). That was a major relief for me, because I’d been really concerned that he might just go on strike and not drink anything if he couldn’t have breastmilk, so that’s one thing I don’t have to worry about anymore. Also, the anesthesiologist and the post-op nurse both told me that I’d need to pump and dump my milk for at least the first feeding that day because I’d had morphine products during the surgery. The nurse even went out of her way to find a hand-held pump for me since I hadn’t brought mine down. But fortunately, someone had called a lactation consultant, and she stopped by right before I was about to leave the recovery room, and she told me that as long as I was awake, I could nurse (and she added that all moms who’ve had c-sections have had morphine products, too, and they’re still encouraged to breastfeed right away, and since Jackson is WAY older than a newborn, it would not cause him any trouble at all). So as soon as I got home, he and I settled in for a long nursing session, even though he’d just had some formula about 45 minutes before—this made me feel a little better about him apparently LIKING the formula, because he usually nurses for about 7 or 8 minutes these days, and it was clear he had really missed me and missed nursing this morning. I love that boy. Damn, it is going to be so hard to stop nursing him cold turkey in a few weeks.
But back to the good news. I had a chest x-ray before the procedure to see whether there were any masses in my chest that might compromise my airway during the anesthesia. (This was hard for me emotionally, because all I could think about was the chest x-rays Hudson had done on the day she was diagnosed. She was so very little next to those big machines.) Just before the surgery, the resident told me that the chest x-ray looked clear, which we think is good news. The x-ray doesn’t show as much detail as a CT scan will, but if there were any large masses there in my chest, they would have been visible. There may still be cancerous nodes there, but they aren’t big ones. My hope is that this means two things: one, that the cancer has not spread below my diaphragm (involvement of lymph nodes both above and below the diaphragm means the cancer has progressed to Stage 3), because the progression of Hodgkin’s is usually orderly through each lymph node site (if it started in my neck, it would have to go through my sternum before it crossed the diaphragm); and two, that I might be able to avoid radiation to my chest. The typical treatment for Hodgkin’s is a course of chemotherapy followed by radiation (there are some variations depending on stage) to the involved areas. But radiation to the chest is associated with second cancers much later in life, and since I am only 36, I’d be taking a big risk of possible development of a breast or lung cancer 20 years from now. So hopefully, either the cancer is not in my chest at all, or if it is, it’s in such small spots that it can be treated with just the chemo. I have no idea if any of this is accurate—I’m basing it only on what I have read while researching, but we’ll figure all that out soon enough. For now, it’s reason to hope, and that works for me.
They also did bloodwork today, and although I didn’t get the details (the surgeon told Ed about it while I was in recovery and I didn’t know about it until we got home, so I couldn’t ask questions), it apparently looks good. I don’t know if they did a differential (where we’d know more about my lymphocytes and other lymphoma indicators), but if it looks good, that likely means that my white blood cell count and platelet counts are normal. Elevated white blood cell count and low platelets are often signs of lymphoma, so again, my hope is that this means that we caught the cancer at an early stage and that I am going to be cured in no time.
And finally, we found out that the hematology oncology department has already scheduled me for a PET scan on Tuesday, which is great news. The PET scan will tell us more about whether the cancer has progressed and if so, where. I had thought we were going to have to wait first for the biopsy results to come back and then for a meeting with a heme-onc doctor before they would do any more tests for staging, but when I spoke to the scheduler, he said that it’s an “evolving diagnosis,” so they were fine doing it before the final pathology report.
All in all, I think it was a win for me and hopefully a good omen for the future. Again, thank you all so much for your support. I really can’t tell you how important it is.
Thursday, April 5, 2012
Sideways World
If you are a fan of the series “Lost,” you know what I mean by “sideways world.” There’s one world where everything is real and happening in real time, and then there’s the sideways world, where everyone is in some sort of in-between world after death but before moving on to something else. That is kind of how I feel right now, except my sideways world is the one where I have cancer.
It’s just too surreal. Yesterday, Ed and I went to the hospital for what we thought would be the surgical biopsy of one of the swollen lymph nodes in my neck. As it turned out, I had miscommunicated with the patient coordinator and we actually only had a consult with the surgeon (the biopsy will be tomorrow morning in the operating room under general anesthesia). When we were leaving the clinic, we crossed the pedestrian walkway to the parking deck. We passed a young woman, probably in her twenties, holding on to the arm of someone who looked like her dad as they walked past us. She looked thin, a little frail, actually, and she was wearing a head scarf. She was obviously a cancer patient. Our eyes met and I smiled at her, not a big smile, just a little one.
I thought to myself, “That is going to be me in a few months. How is that even possible?”
How is that possible? This morning, I swam almost a mile in the pool and ran almost seven miles. The whole time, I was thinking, “How is it possible that I have cancer?”
This afternoon, I got a call from the Leukemia and Lymphoma Society, offering to hook me up with basically a cancer mentor, a person close in age and gender with a similar diagnosis to me, to offer me support and answer questions, etc. I asked her if I could get back to her. Honestly, I still don’t even know where to begin to know what to think, what to ask, what kind of support I might need. Part of this is because there’s still so much we don’t know—what type of Hodgkin’s I have, whether it has progressed beyond the lymph nodes in my neck (again, I fear the pressure I am feeling off and on in my chest is more than just stress—it is very typical for Hodgkin’s to spread to the lymph nodes in the sternum)—but it’s mostly because I am still having such a hard time grasping that it’s really real. I’m here in the real world, training for a triathlon coming up in three short weeks, making plans with our architect to start the renovations on our new house, looking forward to spending a magical summer with Jackson as he becomes more and more engaged with the people and the world around him. But over there in sideways world, I have lymphoma. I’m having a lymph node removed from my neck tomorrow, a procedure requiring general anesthesia (which scares me more than just a little bit) and which will give me a scar on my neck and keep me out of the pool for at least a week just when I’m supposed to be starting to peak in my training. I’m staring down numerous medical appointments over the next several weeks that will take me away from Jackson. I am coming to terms with the fact that I will not be able to breastfeed him through his first birthday, both because I won’t be with him for much of the time and because once I start chemotherapy, my milk will be toxic. We’ve got some milk in the freezer but not enough to get us all the way through May. I am just beginning to read about others’ experiences with chemotherapy, trying to figure out whether I could possibly still attend a legal writing conference at the end of May with my future colleagues, whether it will even be possible for me to start my new job this fall as we had planned, whether we need to hire a nanny rather than putting Jackson in school because I will be so immune-compromised, and whether I will want to wear a wig or just a head scarf.
How the hell did we get here? How did this become my life? And how horribly familiar it feels to be asking these questions again, questions that we just asked not even two years ago when Hudson was so cruelly taken from us.
And yet, in spite of it all, I somehow still feel positive and hopeful. I am afraid of lots of things to come, for sure, mostly of what it will be like to go through the chemo, but I am making plans as if a year from now, this will be mostly behind us, with the exception of a lifetime of screenings to make sure the cancer hasn’t returned. I feel very well physically, which I can only hope bodes well for my ultimate prognosis. I am continuing to train for my race, working under the assumption that I’ll be able to complete it (and I just read about a study that showed that vigorous physical activity resulted in better outcomes for lymphoma patients and that it is safe and effective even during chemo!). I am treating this cancer almost like it is a corporeal being, talking trash to it all the time and warning it to get going before I and my entire posse (which is a big freaking posse) have to chase it out of town.
The real world and sideways world are going to converge pretty soon. And although I have no idea what it’s going to be like, I feel prepared to face it head on with the help of my family and my incredible friends and all of you. Somehow, I feel prepared. I think it must be another gift from my little girl.
It’s just too surreal. Yesterday, Ed and I went to the hospital for what we thought would be the surgical biopsy of one of the swollen lymph nodes in my neck. As it turned out, I had miscommunicated with the patient coordinator and we actually only had a consult with the surgeon (the biopsy will be tomorrow morning in the operating room under general anesthesia). When we were leaving the clinic, we crossed the pedestrian walkway to the parking deck. We passed a young woman, probably in her twenties, holding on to the arm of someone who looked like her dad as they walked past us. She looked thin, a little frail, actually, and she was wearing a head scarf. She was obviously a cancer patient. Our eyes met and I smiled at her, not a big smile, just a little one.
I thought to myself, “That is going to be me in a few months. How is that even possible?”
How is that possible? This morning, I swam almost a mile in the pool and ran almost seven miles. The whole time, I was thinking, “How is it possible that I have cancer?”
This afternoon, I got a call from the Leukemia and Lymphoma Society, offering to hook me up with basically a cancer mentor, a person close in age and gender with a similar diagnosis to me, to offer me support and answer questions, etc. I asked her if I could get back to her. Honestly, I still don’t even know where to begin to know what to think, what to ask, what kind of support I might need. Part of this is because there’s still so much we don’t know—what type of Hodgkin’s I have, whether it has progressed beyond the lymph nodes in my neck (again, I fear the pressure I am feeling off and on in my chest is more than just stress—it is very typical for Hodgkin’s to spread to the lymph nodes in the sternum)—but it’s mostly because I am still having such a hard time grasping that it’s really real. I’m here in the real world, training for a triathlon coming up in three short weeks, making plans with our architect to start the renovations on our new house, looking forward to spending a magical summer with Jackson as he becomes more and more engaged with the people and the world around him. But over there in sideways world, I have lymphoma. I’m having a lymph node removed from my neck tomorrow, a procedure requiring general anesthesia (which scares me more than just a little bit) and which will give me a scar on my neck and keep me out of the pool for at least a week just when I’m supposed to be starting to peak in my training. I’m staring down numerous medical appointments over the next several weeks that will take me away from Jackson. I am coming to terms with the fact that I will not be able to breastfeed him through his first birthday, both because I won’t be with him for much of the time and because once I start chemotherapy, my milk will be toxic. We’ve got some milk in the freezer but not enough to get us all the way through May. I am just beginning to read about others’ experiences with chemotherapy, trying to figure out whether I could possibly still attend a legal writing conference at the end of May with my future colleagues, whether it will even be possible for me to start my new job this fall as we had planned, whether we need to hire a nanny rather than putting Jackson in school because I will be so immune-compromised, and whether I will want to wear a wig or just a head scarf.
How the hell did we get here? How did this become my life? And how horribly familiar it feels to be asking these questions again, questions that we just asked not even two years ago when Hudson was so cruelly taken from us.
And yet, in spite of it all, I somehow still feel positive and hopeful. I am afraid of lots of things to come, for sure, mostly of what it will be like to go through the chemo, but I am making plans as if a year from now, this will be mostly behind us, with the exception of a lifetime of screenings to make sure the cancer hasn’t returned. I feel very well physically, which I can only hope bodes well for my ultimate prognosis. I am continuing to train for my race, working under the assumption that I’ll be able to complete it (and I just read about a study that showed that vigorous physical activity resulted in better outcomes for lymphoma patients and that it is safe and effective even during chemo!). I am treating this cancer almost like it is a corporeal being, talking trash to it all the time and warning it to get going before I and my entire posse (which is a big freaking posse) have to chase it out of town.
The real world and sideways world are going to converge pretty soon. And although I have no idea what it’s going to be like, I feel prepared to face it head on with the help of my family and my incredible friends and all of you. Somehow, I feel prepared. I think it must be another gift from my little girl.
Monday, April 2, 2012
So It Begins
Today was my first official day as a cancer patient; that is, today is the first day I spent talking to a zillion different people trying to figure out what the hell to do next.
And let me just say that it mostly sucked. I started the day trying to get an appointment with a hematologist/oncologist and learned that they wouldn’t get me in until we had the final results from the needle biopsy I had on Thursday. I still wanted to get the ball rolling, so I sent over the records I already had, which included bloodwork from a few weeks ago and the report from my CT scan. For the first time, I looked in detail at the lab report from my bloodwork and realized that my primary care doc had not ordered a white blood cell differential, which would be the primary way she would have been able to tell whether there were any signs of lymphoma in my blood (a differential is a count of different types of white blood cells—often with lymphoma, these counts will be abnormal). She had told me during the appointment that she was going to order a differential and when she sent me the results, she sent a cover letter saying there were no signs of lymphoma, so I just assumed she’d done the differential. But the report itself explicitly says, “Complete Blood Count; No Differential.” So for the several days since the biopsy, I’d been feeling hopeful that the lymphoma was in a very early stage since it was not yet affecting my WBC counts. But now I realize that we actually know nothing about those counts and so we have no idea if my bloodwork is favorable or not.
Then came a call from the ENT in DC who had ordered the needle biopsy telling me that the needle biopsy was “not diagnostic,” meaning that they didn’t get enough tissue to confirm the diagnosis. Everything I’d read already told me that needle biopsies are rarely diagnostic for lymphoma and that a surgical biopsy would be required anyway to determine the “architecture” of the lymphoma if one is present, so I don’t really understand why the ENT didn’t just order a surgical biopsy to start with. Since the final pathology report was not diagnostic, I now had to schedule a surgical biopsy in order to confirm the diagnosis (which had to be done before I could meet with an oncologist). I felt strongly about doing this here at UNC rather than back home in DC (fewer problems transferring records), which meant that I had to find an ENT and hope to be able to get in quickly. Luckily, the ENT department at UNC has a special head and neck oncology section, and the patient coordinator there was incredibly nice and helpful. I told her I wasn’t sure where to start with what I needed to do and she said I was talking to the right person. She checked the schedule and told me that I was really lucky because the chief actually had a cancellation on Wednesday—otherwise, I’d have been waiting 10 days to 2 weeks before I could even get the damn biopsy done. She told me she needed me to get her the final pathology report and slides, as well as my doctors’ clinic notes, as soon as possible. So I got on the phone to DC and started calling all the places where I thought I could get these records and ended up making four different phone calls until finally someone told me that I just needed to call the medical records department. If only the FIRST person had told me this, it would have made this process so much easier. When I called medical records, she first told me that I’d have to fill out an authorization and wait 10-14 business days. I am not usually rude to any person helping me on the phone or in person, but I was so done from the rest of the morning that I cut her off and said, “That’s not going to work. I’m having a biopsy done on Wednesday and the doctor needs these records urgently.” Then she told me that the doctor could request the records himself on an urgent basis. Again, a totally easy solution that it would have been nice if someone had explained to me four phone calls ago. Gah.
I left the patient coordinator back at UNC a voice mail full of gabbledy-gook trying to explain what she needed to do and giving her the relevant phone numbers. She was so nice when she called back, telling me not to worry, that I was doing a great job handling all of this. She said she’d taken care of getting everything the surgeon would need and told me to call her anytime I had questions. I really think that folks who work in oncology departments are just a different breed—thank goodness, because this entire process is overwhelming and terrifying, especially right at the beginning, and it makes a huge difference to hear someone tell you that you are doing just fine.
So just when I was hoping that we’d have some answers to our gazillion questions in a few days, it looks more likely that it will be at least a week before we know much more about the final diagnosis and the subtype of Hodgkin’s, let alone getting other tests done for staging.
It was a rough and tiring day. Once I know what the hell is going on, once we have a plan of attack, I will feel so much better about all of this, because then I can start making plans. Everything is on hold right now, and I really don’t have a lot of time for things to be on hold. Within the next four weeks, I have to say goodbye to all of our friends in DC, move my family out of our house, finish training for and complete a triathlon, meet with our architect to begin working on the initial plans for renovating our new house, and grade my students’ final papers. And now, on top of all that, I have to manage this damn cancer and try to squeeze in as much snuggling and nursing with Jackson as I can before I start treatment, when I’ll be spending half- and maybe full days away from him and will probably not feel so hot even when I am at home.
And one of the things that makes me saddest of all is this: I already had too many things going on as it was to spend as much time as I needed with my sweet girl. I was already feeling pulled away from her more than I wanted to be. And now, there is this whole new giant thing sucking my time, energy, and attention. I miss her so much every moment, but now I feel like I miss her even more, like she is as far away as she has ever been because I am so distracted. I am so sad that this blog, what I’ve called a chronicle of my learning to live again after Hudson’s death, is now also a chronicle of my journey through cancer.
It was a rough first day as a cancer patient. But fortunately, I’m way more than just a cancer patient. I just have to figure out how to manage this thing so that “cancer patient” stays way down at the bottom of the list of things that I am. Again, I think this will get a lot easier once we have a plan.
For now, I’ll think about this picture. More than half of my Team in Training teammates raced in the Lavaman Triathlon in Hawaii yesterday. They posted this picture that they took right before the start. It reminded me not only of how incredibly well-supported I am going to be through this fight, but also of why I decided to do Team in Training myself. Because every person out there racing has the name of someone like me on her wrist or on her shirt or in her heart. TNT is a battle cry against blood cancer. And when you’ve just been diagnosed with one, battle cries are really what you need to hear.
Donate to Team in Training.
And let me just say that it mostly sucked. I started the day trying to get an appointment with a hematologist/oncologist and learned that they wouldn’t get me in until we had the final results from the needle biopsy I had on Thursday. I still wanted to get the ball rolling, so I sent over the records I already had, which included bloodwork from a few weeks ago and the report from my CT scan. For the first time, I looked in detail at the lab report from my bloodwork and realized that my primary care doc had not ordered a white blood cell differential, which would be the primary way she would have been able to tell whether there were any signs of lymphoma in my blood (a differential is a count of different types of white blood cells—often with lymphoma, these counts will be abnormal). She had told me during the appointment that she was going to order a differential and when she sent me the results, she sent a cover letter saying there were no signs of lymphoma, so I just assumed she’d done the differential. But the report itself explicitly says, “Complete Blood Count; No Differential.” So for the several days since the biopsy, I’d been feeling hopeful that the lymphoma was in a very early stage since it was not yet affecting my WBC counts. But now I realize that we actually know nothing about those counts and so we have no idea if my bloodwork is favorable or not.
Then came a call from the ENT in DC who had ordered the needle biopsy telling me that the needle biopsy was “not diagnostic,” meaning that they didn’t get enough tissue to confirm the diagnosis. Everything I’d read already told me that needle biopsies are rarely diagnostic for lymphoma and that a surgical biopsy would be required anyway to determine the “architecture” of the lymphoma if one is present, so I don’t really understand why the ENT didn’t just order a surgical biopsy to start with. Since the final pathology report was not diagnostic, I now had to schedule a surgical biopsy in order to confirm the diagnosis (which had to be done before I could meet with an oncologist). I felt strongly about doing this here at UNC rather than back home in DC (fewer problems transferring records), which meant that I had to find an ENT and hope to be able to get in quickly. Luckily, the ENT department at UNC has a special head and neck oncology section, and the patient coordinator there was incredibly nice and helpful. I told her I wasn’t sure where to start with what I needed to do and she said I was talking to the right person. She checked the schedule and told me that I was really lucky because the chief actually had a cancellation on Wednesday—otherwise, I’d have been waiting 10 days to 2 weeks before I could even get the damn biopsy done. She told me she needed me to get her the final pathology report and slides, as well as my doctors’ clinic notes, as soon as possible. So I got on the phone to DC and started calling all the places where I thought I could get these records and ended up making four different phone calls until finally someone told me that I just needed to call the medical records department. If only the FIRST person had told me this, it would have made this process so much easier. When I called medical records, she first told me that I’d have to fill out an authorization and wait 10-14 business days. I am not usually rude to any person helping me on the phone or in person, but I was so done from the rest of the morning that I cut her off and said, “That’s not going to work. I’m having a biopsy done on Wednesday and the doctor needs these records urgently.” Then she told me that the doctor could request the records himself on an urgent basis. Again, a totally easy solution that it would have been nice if someone had explained to me four phone calls ago. Gah.
I left the patient coordinator back at UNC a voice mail full of gabbledy-gook trying to explain what she needed to do and giving her the relevant phone numbers. She was so nice when she called back, telling me not to worry, that I was doing a great job handling all of this. She said she’d taken care of getting everything the surgeon would need and told me to call her anytime I had questions. I really think that folks who work in oncology departments are just a different breed—thank goodness, because this entire process is overwhelming and terrifying, especially right at the beginning, and it makes a huge difference to hear someone tell you that you are doing just fine.
So just when I was hoping that we’d have some answers to our gazillion questions in a few days, it looks more likely that it will be at least a week before we know much more about the final diagnosis and the subtype of Hodgkin’s, let alone getting other tests done for staging.
It was a rough and tiring day. Once I know what the hell is going on, once we have a plan of attack, I will feel so much better about all of this, because then I can start making plans. Everything is on hold right now, and I really don’t have a lot of time for things to be on hold. Within the next four weeks, I have to say goodbye to all of our friends in DC, move my family out of our house, finish training for and complete a triathlon, meet with our architect to begin working on the initial plans for renovating our new house, and grade my students’ final papers. And now, on top of all that, I have to manage this damn cancer and try to squeeze in as much snuggling and nursing with Jackson as I can before I start treatment, when I’ll be spending half- and maybe full days away from him and will probably not feel so hot even when I am at home.
And one of the things that makes me saddest of all is this: I already had too many things going on as it was to spend as much time as I needed with my sweet girl. I was already feeling pulled away from her more than I wanted to be. And now, there is this whole new giant thing sucking my time, energy, and attention. I miss her so much every moment, but now I feel like I miss her even more, like she is as far away as she has ever been because I am so distracted. I am so sad that this blog, what I’ve called a chronicle of my learning to live again after Hudson’s death, is now also a chronicle of my journey through cancer.
It was a rough first day as a cancer patient. But fortunately, I’m way more than just a cancer patient. I just have to figure out how to manage this thing so that “cancer patient” stays way down at the bottom of the list of things that I am. Again, I think this will get a lot easier once we have a plan.
For now, I’ll think about this picture. More than half of my Team in Training teammates raced in the Lavaman Triathlon in Hawaii yesterday. They posted this picture that they took right before the start. It reminded me not only of how incredibly well-supported I am going to be through this fight, but also of why I decided to do Team in Training myself. Because every person out there racing has the name of someone like me on her wrist or on her shirt or in her heart. TNT is a battle cry against blood cancer. And when you’ve just been diagnosed with one, battle cries are really what you need to hear.
Donate to Team in Training.
Saturday, March 31, 2012
The Day After
*Just want to warn you upfront that this post is rather littered with the f-word. Sorry, but as I’ve said before, sometimes it is the only word that works. This is most definitely one of those times. This post is also garbled, much like my mind right now.
First of all, thank you. Thank you so much. A million times over, thank you. One of the reasons I wanted to just go ahead and share our news, no matter how new or raw it might be, is that I knew that the “bucking-up brigade” (Downton Abbey fans out there?) would be right there, ready and waiting to start the bucking up. Because despite the purposely positive tone of yesterday’s post, I definitely needed, and need, and will need for a really long time, some bucking up. Make no mistake: I am scared. I am confused. I am angry (although I think I was a lot angrier at the guy who honked (and yelled!) at me in the hospital parking lot this morning because he thought I was going to hit his precious M6 convertible while I was backing into my space. I was nowhere near him. I so wanted to get out and scream into his window, “I got diagnosed with cancer yesterday. What’s your fucking excuse?!” I really wanted to key his car when I got back and he wasn’t in it anymore. Maybe my anger was a tad misdirected.). I needed the bucking up. Big time. And you all came through, big time. Thank you. Thank you. Thank you.
Scared, confused, angry, yes. But right now, more than anything, I am still just stunned and disbelieving. As the past three weeks have unfolded, I have felt much like I did during those awful hours in the ER with Hudson before she was diagnosed. With each passing minute, it became clearer and clearer that at best, we were in for a very frightening experience, and at worst… well, we just couldn’t think about that at the time. All we could do that whole day was keep breathing and try, impossibly, to comprehend what was happening before our very eyes. It was a down-the-rabbit-hole experience if ever there was one. Reality just yanked us along, step by horrifying step, and we could do nothing except stumble along helplessly, waiting for someone to tell us what came next.
After I’d first noticed the swollen lymph nodes in early February and saw the doctor about them, they seemed to get smaller again, and we chalked them up to an infectious process of some kind. I forgot about them altogether for a few weeks. And then out of nowhere, I passed my hand over my neck again and there they were again (or still? I really don’t know, because I hadn’t been monitoring them, thinking they’d gone away). Over the next ten days, after a visit with the primary care doc, discussions with Jessica and my friend Nirav, a critical care doc at Maryland, and a visit to an ENT, it became clearer and clearer that it was time to get scared. When the ENT wanted a CT scan and a biopsy, I wasn’t surprised—in fact, I was relieved that we were going to get to the bottom of it as quickly as possible. But I was also in complete disbelief. I just couldn’t believe that the word “biopsy” was even on my radar. Was anywhere within 600,000 fucking miles of my radar. Even as I went through each day feeling as though it were simply impossible that the universe could possibly shit on us in such a terrible way again, I also grew more and more certain that that’s exactly what it was about to do. It was (and still is) an incredibly surreal time. I felt like I was in the mirror room at the fun house—turn this direction and life looks one way, turn another direction and it looks totally different, and every direction feels completely insane. In one breath, we were giddily discussing our crazy plans to renovate a crappy 1960s ranch house into a beautiful, light-filled bungalow that we’d live in until we died. And in the next breath, we were discussing the possibility that I might have cancer.
So when the pathologist finished looking at the slides and came back over to the table and said, “We’ll still have to do confirmatory tests, but it looks like Hodgkin’s to me. I’m so sorry,” I was simultaneously shocked and unsurprised. I don’t know how that’s possible, but it’s true. I’d been nearly certain that’s what I was going to hear, and yet I was still in utter disbelief that this could possibly happen. How the fuck could this possibly happen? How. The. Fuck. And of course, right after that, WHY? Why is this happening to us? AGAIN?
I read my post from yesterday, and I mean it. I read the few responses I’ve managed to write to messages and Facebook posts, and I mean them, too. I am trying to think positive. I am trying not to think too far into the future. But in everything I say and write, I also recognize the same protective coating of utter shock that kept me alive in the days after Hudson got sick and died. I read what I write and I listen to what I say and I think, “Wow, I sound way more upbeat than it seems I should feel.” But I’m not doing it on purpose. At least I don’t think I am. Maybe my brain is doing it on my behalf, to protect me from the fear, from the confusion, from the anger. After all, it has lots of practice at this.
And it’s a good thing, because in many ways, I feel the same today that I did the day after Hudson died. Obviously, nothing, nothing short of losing Ed or Jackson could ever be as bad as that, but the fear of the unknown future is the same. When Hudson died, I didn’t know how I would live. I knew I would live, but I didn’t know how. I had no idea what was in store for me, but I knew it would be awful. It might get better afterward, but it would be awful first. I just didn’t know how awful it might get. Today is the same. I know there is a dark night ahead of me, but I have no idea how dark it might get. I have that same feeling I had then that something is stepping right in the middle of my chest and won’t let up (but this time, I am terrified that it’s actually the cancer). And I am scared. And confused. And angry.
But the shock works. And the bucking up works. And Ed and Jackson and Hudson work. I have no idea what lies ahead, but on this, another terrible day after, I’m just grateful for that protection.
First of all, thank you. Thank you so much. A million times over, thank you. One of the reasons I wanted to just go ahead and share our news, no matter how new or raw it might be, is that I knew that the “bucking-up brigade” (Downton Abbey fans out there?) would be right there, ready and waiting to start the bucking up. Because despite the purposely positive tone of yesterday’s post, I definitely needed, and need, and will need for a really long time, some bucking up. Make no mistake: I am scared. I am confused. I am angry (although I think I was a lot angrier at the guy who honked (and yelled!) at me in the hospital parking lot this morning because he thought I was going to hit his precious M6 convertible while I was backing into my space. I was nowhere near him. I so wanted to get out and scream into his window, “I got diagnosed with cancer yesterday. What’s your fucking excuse?!” I really wanted to key his car when I got back and he wasn’t in it anymore. Maybe my anger was a tad misdirected.). I needed the bucking up. Big time. And you all came through, big time. Thank you. Thank you. Thank you.
Scared, confused, angry, yes. But right now, more than anything, I am still just stunned and disbelieving. As the past three weeks have unfolded, I have felt much like I did during those awful hours in the ER with Hudson before she was diagnosed. With each passing minute, it became clearer and clearer that at best, we were in for a very frightening experience, and at worst… well, we just couldn’t think about that at the time. All we could do that whole day was keep breathing and try, impossibly, to comprehend what was happening before our very eyes. It was a down-the-rabbit-hole experience if ever there was one. Reality just yanked us along, step by horrifying step, and we could do nothing except stumble along helplessly, waiting for someone to tell us what came next.
After I’d first noticed the swollen lymph nodes in early February and saw the doctor about them, they seemed to get smaller again, and we chalked them up to an infectious process of some kind. I forgot about them altogether for a few weeks. And then out of nowhere, I passed my hand over my neck again and there they were again (or still? I really don’t know, because I hadn’t been monitoring them, thinking they’d gone away). Over the next ten days, after a visit with the primary care doc, discussions with Jessica and my friend Nirav, a critical care doc at Maryland, and a visit to an ENT, it became clearer and clearer that it was time to get scared. When the ENT wanted a CT scan and a biopsy, I wasn’t surprised—in fact, I was relieved that we were going to get to the bottom of it as quickly as possible. But I was also in complete disbelief. I just couldn’t believe that the word “biopsy” was even on my radar. Was anywhere within 600,000 fucking miles of my radar. Even as I went through each day feeling as though it were simply impossible that the universe could possibly shit on us in such a terrible way again, I also grew more and more certain that that’s exactly what it was about to do. It was (and still is) an incredibly surreal time. I felt like I was in the mirror room at the fun house—turn this direction and life looks one way, turn another direction and it looks totally different, and every direction feels completely insane. In one breath, we were giddily discussing our crazy plans to renovate a crappy 1960s ranch house into a beautiful, light-filled bungalow that we’d live in until we died. And in the next breath, we were discussing the possibility that I might have cancer.
So when the pathologist finished looking at the slides and came back over to the table and said, “We’ll still have to do confirmatory tests, but it looks like Hodgkin’s to me. I’m so sorry,” I was simultaneously shocked and unsurprised. I don’t know how that’s possible, but it’s true. I’d been nearly certain that’s what I was going to hear, and yet I was still in utter disbelief that this could possibly happen. How the fuck could this possibly happen? How. The. Fuck. And of course, right after that, WHY? Why is this happening to us? AGAIN?
I read my post from yesterday, and I mean it. I read the few responses I’ve managed to write to messages and Facebook posts, and I mean them, too. I am trying to think positive. I am trying not to think too far into the future. But in everything I say and write, I also recognize the same protective coating of utter shock that kept me alive in the days after Hudson got sick and died. I read what I write and I listen to what I say and I think, “Wow, I sound way more upbeat than it seems I should feel.” But I’m not doing it on purpose. At least I don’t think I am. Maybe my brain is doing it on my behalf, to protect me from the fear, from the confusion, from the anger. After all, it has lots of practice at this.
And it’s a good thing, because in many ways, I feel the same today that I did the day after Hudson died. Obviously, nothing, nothing short of losing Ed or Jackson could ever be as bad as that, but the fear of the unknown future is the same. When Hudson died, I didn’t know how I would live. I knew I would live, but I didn’t know how. I had no idea what was in store for me, but I knew it would be awful. It might get better afterward, but it would be awful first. I just didn’t know how awful it might get. Today is the same. I know there is a dark night ahead of me, but I have no idea how dark it might get. I have that same feeling I had then that something is stepping right in the middle of my chest and won’t let up (but this time, I am terrified that it’s actually the cancer). And I am scared. And confused. And angry.
But the shock works. And the bucking up works. And Ed and Jackson and Hudson work. I have no idea what lies ahead, but on this, another terrible day after, I’m just grateful for that protection.
Thursday, March 29, 2012
Life Is Both Cruel and Beautiful
Of course, I have known this truth for a long time, but I never really knew it until Hudson died. And the world grew so very dark. And we were surrounded and uplifted by so much love and light from literally all corners of the earth. And then Jackson was born. And the world grew brighter again. And all those corners of the world celebrated with us.
Today, life showed me once again how terribly cruel and terribly beautiful it can be.
This afternoon, I was diagnosed with Hodgkin’s lymphoma. I discovered some swollen lymph nodes back in the beginning of February, and after getting them looked at and waiting them out and trying to treat them with antibiotics, I ultimately went for a CT scan last week and a biopsy today. The pathologist told me within minutes of looking at the slides that it appeared to be Hodgkin’s. They still have to do confirmatory tests, but it is all but certain that they will show what we already know, what I have been preparing myself for since I first felt the lump in my neck several weeks ago.
Life is cruel.
Last night, we went under contract on a house in Carrboro that we plan to renovate into our dream home, complete with a 1-acre yard for Easter egg hunts and hide-and-seek and maybe even an at-home wedding for one of our kids one day. Today, I have cancer. This morning, I swam a mile as part of my triathlon training to raise money for the Leukemia and Lymphoma Society. This afternoon, I became a lymphoma patient myself. The irony is almost surreal. I can still barely believe I am even writing these words right now.
There is still so much we don’t know. We suspect, and hope, for a variety of clinical reasons, that the cancer is still in a very early stage. Given that we are moving to North Carolina in a few weeks anyway, our plan is just to meet with an oncologist at UNC early next week and go from there. Hodgkin’s is very curable, even in advanced stages—cure rates are as high as 80-90% depending on the type and other factors. Despite my lack of faith in odds based on our experience with Hudson (the survival rate of her type of meningitis was also around 80-90%), I am obviously going to start from the proposition that I am going to be one of the lucky ones in that 80-90%. I am trying desperately not to even entertain an alternative. I am trying desperately not to think about all that this means for the rest of my life—whether I’ll be able to have more children, whether I’ll get to watch Jackson grow up, whether I’ll get to tend the garden I plan to plant for Hudson at our new home, whether I’ll get to spend many more decades with my dear Ed like I have planned and dreamed of doing.
No. I will not think about those things. Not today.
Because life is also beautiful.
Ed is unwavering in his love, his support, and his resolve that we will survive this. We. All of us. Will survive. He and Jackson and Hudson are my very reasons for being, and they are the most stunning, perfect, incredible reasons any person could ever ask for. I have amazing family and friends who will be there for us for whatever we need for as long as we need. I remain surrounded by love and light from all corners of the world (and thank you all for continuing to check in and read and think of us even during my long periods of silence). I have health insurance. I will get world-class treatment. I have a dream home just waiting to be uncovered and lived in and loved by us for many decades with our children who will grow up in it and forever return to it whenever they need an anchor. I swam a mile this morning. With cancer.
One Good Thing about this diagnosis is that I am reminded, once again, that in spite of the ridiculously rotten luck that just refuses to leave me alone, I am still astoundingly fortunate.
Life is both cruel and beautiful. I choose to focus on the beautiful. If there’s even a choice.
Today, life showed me once again how terribly cruel and terribly beautiful it can be.
This afternoon, I was diagnosed with Hodgkin’s lymphoma. I discovered some swollen lymph nodes back in the beginning of February, and after getting them looked at and waiting them out and trying to treat them with antibiotics, I ultimately went for a CT scan last week and a biopsy today. The pathologist told me within minutes of looking at the slides that it appeared to be Hodgkin’s. They still have to do confirmatory tests, but it is all but certain that they will show what we already know, what I have been preparing myself for since I first felt the lump in my neck several weeks ago.
Life is cruel.
Last night, we went under contract on a house in Carrboro that we plan to renovate into our dream home, complete with a 1-acre yard for Easter egg hunts and hide-and-seek and maybe even an at-home wedding for one of our kids one day. Today, I have cancer. This morning, I swam a mile as part of my triathlon training to raise money for the Leukemia and Lymphoma Society. This afternoon, I became a lymphoma patient myself. The irony is almost surreal. I can still barely believe I am even writing these words right now.
There is still so much we don’t know. We suspect, and hope, for a variety of clinical reasons, that the cancer is still in a very early stage. Given that we are moving to North Carolina in a few weeks anyway, our plan is just to meet with an oncologist at UNC early next week and go from there. Hodgkin’s is very curable, even in advanced stages—cure rates are as high as 80-90% depending on the type and other factors. Despite my lack of faith in odds based on our experience with Hudson (the survival rate of her type of meningitis was also around 80-90%), I am obviously going to start from the proposition that I am going to be one of the lucky ones in that 80-90%. I am trying desperately not to even entertain an alternative. I am trying desperately not to think about all that this means for the rest of my life—whether I’ll be able to have more children, whether I’ll get to watch Jackson grow up, whether I’ll get to tend the garden I plan to plant for Hudson at our new home, whether I’ll get to spend many more decades with my dear Ed like I have planned and dreamed of doing.
No. I will not think about those things. Not today.
Because life is also beautiful.
Ed is unwavering in his love, his support, and his resolve that we will survive this. We. All of us. Will survive. He and Jackson and Hudson are my very reasons for being, and they are the most stunning, perfect, incredible reasons any person could ever ask for. I have amazing family and friends who will be there for us for whatever we need for as long as we need. I remain surrounded by love and light from all corners of the world (and thank you all for continuing to check in and read and think of us even during my long periods of silence). I have health insurance. I will get world-class treatment. I have a dream home just waiting to be uncovered and lived in and loved by us for many decades with our children who will grow up in it and forever return to it whenever they need an anchor. I swam a mile this morning. With cancer.
One Good Thing about this diagnosis is that I am reminded, once again, that in spite of the ridiculously rotten luck that just refuses to leave me alone, I am still astoundingly fortunate.
Life is both cruel and beautiful. I choose to focus on the beautiful. If there’s even a choice.
Saturday, March 10, 2012
Hand-Me-Downs
Hand-Me-Downs
One day this past week, the whole family overslept a bit, so our wonderful part-time babysitter ended up being the person who got Jackson dressed in the morning. When I saw his outfit, my brow furrowed in confusion. “What are those pants?” I said, even though I knew immediately what they were. “Did you get those out of the bottom drawer of the dresser?” Obviously surprised, she said, “Yes, was that OK?” I recovered as quickly as I could and said, “Oh, sure, it’s fine. Those are Hudson’s pants. All the clothes in that bottom drawer were hers.”
Her little brown corduroys. 12-18 months size, which is the size she was wearing when she died, along with some 18 months, too. They fit Jackson perfectly at only nine months.
I knew this day would come, the day when he started wearing that same size (of course, it has come sooner than I thought, because he’s such a big kiddo). Soon the day will come when I will buy bigger sizes for him than she ever got a chance to wear (the only 24 months sizes I ever bought were some jammies I picked up on sale after her first birthday—they were so cheap that I bought a few pairs for the following winter, and of course, they never got used). Soon he will no longer be able to wear any more of her hand-me-downs, because there are no more.
In only eight short months, Jackson will be older than Hudson ever got a chance to be. What remains so incredibly striking and awful about that is the recognition, if not truly the understanding, of how terribly short a time it was that we got to spend with her. He is already well past the halfway mark of her entire little life. How is that possible? He is just now starting to hit all those awesome little developmental strides that she started to hit right around this same age. He has so very much awesomeness left to grow into. Why did she never get that chance?
As I’ve said before, I’m working on not dwelling too much on future events and milestones, but it is so hard to imagine what it will be like to watch Jackson grow up when Hudson never will, to watch him hit every milestone she never did. Of course I don’t want Jackson never to grow beyond seventeen months and twelve days, but watching it happen will be hard nevertheless.
As we get closer and closer to the time very soon when we will leave the only home Hudson ever knew, I feel more and more the weight of the monumental shift in our lives that this move will bring. More so than ever before, I feel like we are moving on without her. Even though I know for certain that she will be with us wherever we go (how could she not be?), I still don’t want to leave her behind.
I am reminded regularly these days of the night we left her at the hospital. It was probably close to 11:00 by the time we had cleared everything out of her room. Ed and I walked out of the hospital with our friend Scott. The car was parked just outside the sliding doors. Ed and Scott started loading the car with all the detritus collected over a three-day stay in the PICU with a dozen friends and family members. I opened the front passenger door to get in and suddenly it hit me that we were leaving without our little girl. Forever. My legs buckled under me and I folded myself over into the seat and sobbed. Sometimes I wonder why I didn’t run back inside, take the elevator back up to the PICU, and fling myself over her body to prevent them from ever taking her away.
I see that moment in my mind’s eye over and over again every time I picture closing the door to this house behind us for the final time. It feels almost the same. Part of me wants to fling myself across the threshold in that moment and refuse to leave without her.
Part of me does not want to keep going on without her. Jackson will keep growing, I know. He has to. I want him to. But I also want endless hand-me-downs from his big sister for him to grow into. And those I cannot have.
One day this past week, the whole family overslept a bit, so our wonderful part-time babysitter ended up being the person who got Jackson dressed in the morning. When I saw his outfit, my brow furrowed in confusion. “What are those pants?” I said, even though I knew immediately what they were. “Did you get those out of the bottom drawer of the dresser?” Obviously surprised, she said, “Yes, was that OK?” I recovered as quickly as I could and said, “Oh, sure, it’s fine. Those are Hudson’s pants. All the clothes in that bottom drawer were hers.”
Her little brown corduroys. 12-18 months size, which is the size she was wearing when she died, along with some 18 months, too. They fit Jackson perfectly at only nine months.
I knew this day would come, the day when he started wearing that same size (of course, it has come sooner than I thought, because he’s such a big kiddo). Soon the day will come when I will buy bigger sizes for him than she ever got a chance to wear (the only 24 months sizes I ever bought were some jammies I picked up on sale after her first birthday—they were so cheap that I bought a few pairs for the following winter, and of course, they never got used). Soon he will no longer be able to wear any more of her hand-me-downs, because there are no more.
In only eight short months, Jackson will be older than Hudson ever got a chance to be. What remains so incredibly striking and awful about that is the recognition, if not truly the understanding, of how terribly short a time it was that we got to spend with her. He is already well past the halfway mark of her entire little life. How is that possible? He is just now starting to hit all those awesome little developmental strides that she started to hit right around this same age. He has so very much awesomeness left to grow into. Why did she never get that chance?
As I’ve said before, I’m working on not dwelling too much on future events and milestones, but it is so hard to imagine what it will be like to watch Jackson grow up when Hudson never will, to watch him hit every milestone she never did. Of course I don’t want Jackson never to grow beyond seventeen months and twelve days, but watching it happen will be hard nevertheless.
As we get closer and closer to the time very soon when we will leave the only home Hudson ever knew, I feel more and more the weight of the monumental shift in our lives that this move will bring. More so than ever before, I feel like we are moving on without her. Even though I know for certain that she will be with us wherever we go (how could she not be?), I still don’t want to leave her behind.
I am reminded regularly these days of the night we left her at the hospital. It was probably close to 11:00 by the time we had cleared everything out of her room. Ed and I walked out of the hospital with our friend Scott. The car was parked just outside the sliding doors. Ed and Scott started loading the car with all the detritus collected over a three-day stay in the PICU with a dozen friends and family members. I opened the front passenger door to get in and suddenly it hit me that we were leaving without our little girl. Forever. My legs buckled under me and I folded myself over into the seat and sobbed. Sometimes I wonder why I didn’t run back inside, take the elevator back up to the PICU, and fling myself over her body to prevent them from ever taking her away.
I see that moment in my mind’s eye over and over again every time I picture closing the door to this house behind us for the final time. It feels almost the same. Part of me wants to fling myself across the threshold in that moment and refuse to leave without her.
Part of me does not want to keep going on without her. Jackson will keep growing, I know. He has to. I want him to. But I also want endless hand-me-downs from his big sister for him to grow into. And those I cannot have.
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