Sunday, April 22, 2012


Today, I nursed Jackson for the last time. He was two days shy of 11 months old. I know that he has already received all of the great immunity benefits of breastfeeding. I know that he takes a bottle just fine and doesn’t mind formula at all. But I also know that he wasn’t ready to stop nursing. I had not planned to go cold turkey—I was hoping to do a slightly gradual transition during the weeks before I started chemo, but once we started planning for preserving embryos, I heard from the reproductive endocrinologist that I needed to stop before I start the follicle stimulation cycle. So I tucked him in tight for our final nursing session this afternoon. The whole time, I sat there thinking how selfish I was being for denying him an easier transition just because I want to get these eggs harvested. I could be giving him a week or two more before we really had to quit. I don’t know how I am going to stand it when he is crying out to nurse like he does early in the morning.

Today, we also packed up all of the little things in the house that we don’t want the movers to pack (since most of what they will pack is going to stay in boxes for several months while our house is renovated). All the family photos and our clothes and baby gear. We had to take everything down off of the walls. I went into the babies’ room and gently peeled off the beautiful black-and-white sea creature wall stickers Ed found online when we first decorated the room for Hudson before she was born. Two seahorses, two stingrays, sea grass, bubbles, and finally, two sea turtles. A mama and a baby. I thought about how it seemed like only yesterday that we lovingly placed those stickers on the wall, trying to figure out just the right configuration over the baby’s (we didn’t know at the time whether it would be a Hudson or a Jackson) crib. When we bought them, we were glad they were made of reusable adhesive so they wouldn’t tear up the walls when we moved.  Now, I am just so glad that we are able to take them with us. I wish they weren’t so very full of memory and meaning. But I am also glad they are so very full of memory and meaning.

So many transitions all at once. And I am so not ready for any of them.

Friday, April 20, 2012

These Days

So much has happened in the past five days that I have hardly had a chance to take a breath, it seems. I have started and stopped working on this post several times because there is too much to say and not enough time to say it all. We had two days’ worth of doctors’ appointments in Chapel Hill on Monday and Tuesday before heading back to DC for the last time as residents. Then I flew with Jackson back to Chapel Hill this morning for more appointments this afternoon before Dad, Jackson, and I drive back to DC tomorrow morning for our final few days. I joked on Facebook the other day that I am almost looking forward to starting chemo because it will give me a very good excuse just to sit still for a few hours in a row. One Good Thing about chemo…

On Monday morning, we went to the oncology clinic for the first time, and I was introduced to the medieval paper-based administrative system that UNC unfortunately still employs. I’d been told my appointment was at 9AM. Now before when I’d been given an appointment time, that was the time I was supposed to check in, so I assumed the same was true today. I went to registration at the cancer hospital, showed my hospital and insurance card to the front desk, took a number for my place in line to actually register, and when the number was called, I went back to a booth to actually get checked in. There, an administrative person checked my insurance card again, confirmed my address and some other information, and then the poor thing had to sit there and fill out BY HAND a lab sheet for me to take with me with all of my doctor’s orders for which labs to run on my blood. What??? She was looking at the doctor’s notes on the screen and then marking check boxes by each test to be run. I said, “If the doctor has already made notes in a computer somewhere about which labs to run, why isn’t it possible to just print them out to send along with me?” She totally agreed. I mean, this would make sense for no other reason than to avoid the chance of human error during this ludicrous copying procedure. After she filled out the lab slip, she gave me what seemed like ten other pieces of paper in a folder and sent me upstairs to the heme-onc clinic, where I checked in and was told that I had to have my blood drawn before seeing the doctor. (Mind you, we had another appointment at 10:30, and I had a TON of questions to ask the doctor.) The receptionist sent me down the hall a ways to the lab, where the nurse asked me if I needed an IV. Um, I don’t think so, but how the hell should I know? Who’s running this ship, anyway?? She didn’t start an IV (I’d later come to regret this) and just took a few vials of blood from my arm for the labs. Then we went back to wait for the doctor again. What a circus. By this time it was past 9:30 already.

Finally, we got called back into the clinic, where I met my new best friend, John Strader (I know he doesn’t mind me mentioning his name, because I’m going to help him fundraise for LLS). John is the PA for the heme-onc clinic and has one hell of a biography and one hell of a huge spirit. A survivor of non-Hodgkin’s lymphoma, John also lost a child when his 26-year-old son died of muscular dystrophy. John has run 18 marathons, 10 of which were after his cancer treatment. Despite having been dealt a pretty shitty hand of life cards, he walks through the world with a giant smile on his face and a kind word for everyone. Really an amazing example of how to be a human being. I am really looking forward to getting to know him.

John paged the oncologist for us to let him know that we were finally in an exam room. I already knew I was going to like the oncologist after he called me after hours last week to give me the results of my biopsy and PET scan before we’d even met in person. And he didn’t disappoint. He was kind, friendly, and straightforward, and he explained things in very easy-to-understand language. I said to Ed later that you know you have a good doctor when he answers most of the questions you came to the appointment with before you’ve even had a chance to ask them.

We first discussed my treatment. The standard in my case would be 2-4 cycles of ABVD chemo usually followed by radiation to the areas with enlarged lymph nodes. He said that the study data on the predictive use of PET scanning is now so good that if, after 2 cycles of ABVD, a PET scan shows that I am in complete remission, then we’ll stop the chemo at that point and move on to either radiation or a clinical trial (more on that in a minute) to “mop up” any remaining cancer cells. He said that given my very “low burden of disease” (he used this phrase multiple times—it sounded so wonderful to me), he would be extremely surprised if they didn’t have me in full remission after 2 cycles. TWO CYCLES. That would mean only FOUR chemo treatments. Only TWO months. Absolutely incredible. So I’m holding out hope that I end up being the garden-variety patient and that all traces of the cancer are gone after those first two cycles. He feels pretty confident that I’ll be able to start work on time in August. He said that even if I end up having to do four cycles instead of two, and even though the ABVD regimen is no easy chemo journey, he’s seen plenty of people just sail through it without really getting knocked off their feet. I asked him if he thought a person’s general constitution and attitude before treatment could have anything to do with how they respond to chemo, and he said he definitely thought those things could make a difference. Score another point for me.

The clinical trial I am considering is one that just opened at UNC. The trial involves what is called an antibody-drug conjugate (its name is brentuximab vedotin). It is an antibody that is attached to a chemotherapy agent. The antibody is specifically attracted to CD-20 proteins, which Hodgkin’s cells express at high rates, so the idea is that the treatment will specifically target the Hodgkin’s cells and then deliver the chemotherapeutic agent to those cells only. This also limits the side effects of the treatment significantly, since it doesn’t execute the same systemic attack on ALL of a person’s cells that regular chemo does. Oncologists have been using this treatment with great success in cases of relapsed and refractory (unresponsive to treatment) Hodgkin’s disease. These are patients who have failed multiple rounds of chemotherapy and often even a stem cell transplant, but all of a sudden, they are showing major tumor regression and even complete remission. It had such remarkable results in its trial phases that the FDA fast-tracked approval for its use in those particular patients. But it has been so successful in treating difficult-to-treat disease that many trials are now in progress to discover how it might work as a frontline treatment for newly diagnosed patients. Because of the toxic side effects of prolonged ABVD treatment and radiation, doctors in this trial at UNC are trying to determine if fewer cycles of ABVD followed by the brentuximab vedotin can be equally effective at fully eliminating the disease.

Sounds pretty great, right? Especially for someone as young as I am, who hopes to live a very long life after kicking Hodgkin’s ass, the thought of being able to significantly reduce the long-term toxic effects of lengthy chemo (including lung and heart damage) and radiation (particularly second cancers) is very appealing. Unfortunately, there is one problem. During the initial trials and marketing of the brentuximab vedotin, three patients were afflicted with a disease called PML (progressive multifocal leukoencephalopathy), which is a terrible viral infection with no treatment that attacks the nervous system and basically causes near-certain severe permanent disability or death within a very short time. PML is apparently caused by a latent virus, the JC virus, that many of us had as children. For whatever reason, people who become severely immune-suppressed are at risk of reactivation of this latent virus, which then turns into this devastating disease. Researchers don’t know if the brentuximab itself is a triggering agent for the virus or if the people who developed the PML were so fragile already (recall that these folks have failed multiple cycles of chemo as well as stem cell transplants for a cancer of the immune system) that they were just inherently at a much higher risk of developing the disease.

So the risk is very, very small, particularly in someone like me, who is otherwise completely healthy and will likely only go through two cycles of chemo before taking the new treatment. But even though the risk is small, the potential outcome is almost unacceptable. Weighing the minute risk of near-certain severe disability or death by the end of this year against a significantly greater risk of a second cancer or other long-term side effect 20 years from now is not easy. One piece of information that we can get to help us make the decision is to find out whether I have the JC virus antibodies already. If I am antibody-negative, then my risk of developing PML is basically nonexistent. If I’m antibody-positive, the risk is still incredibly low, but I have to decide whether it’s a risk worth taking, given the alternative (radiation and its possible side effects). I had the test done this morning and it will take about a week until we get the results back.

We also talked about whether I want to get chemo through a peripheral IV, which would have to be placed in my arm every time I come in for chemo, or through a port, which is basically a device that would be implanted in my chest with a catheter that inserts directly into a large vein to my heart. The port would be totally beneath the skin, so I could bathe and swim with it easily. Not only could I receive chemo through it, but the medical team can also draw blood and give me other medications through it as well. At first, I thought a port really wouldn’t be necessary, and it means another surgery (although this one only requires conscious sedation) and another scar. But I’d been reading a lot about them, and it seems that most patients prefer them over the constant process of getting IVs started or getting stuck for blood. And then my oncologist told me that the drugs I’ll be getting can be very caustic to the veins in my arm and cause irritation, and worst case scenario, if an IV ever malfunctions and the drugs leak into the tissues in my arm, I could be severely burned. He told us of one patient who had ulcerated skin from his forearm to his shoulder after one such mishap. Alrighty then, port it is!

The best part of the whole discussion was when he told me we had a little bit of leeway in terms of when to start treatment. He said the magic words. I immediately asked whether we could wait two more weeks so that I could do my triathlon, and he said he thought that would be fine. I almost kissed him!

All in all, it was a pretty great first oncology appointment, if there can be such a thing.

We then checked in with the surgeon who did my biopsy, and I finally got the nasty, sticky, itchy steri-strips off of my incision. Once they were gone, I was amazed at how good it looks. Pretty soon, it will barely be noticeable. The surgeon is a very kind man and wanted to make sure that I was OK with him releasing me from his care—surgery is only involved in Hodgkin’s at the diagnosis phase, and he didn’t want me to feel abandoned if he set me loose. Really nice guy.

Next came the bone marrow biopsy, where they basically stick a giant needle into your pelvic bone in your lower back to pull out both some bone marrow and a tiny piece of bone (my new best friend, John, who performed mine, said it was like taking both some honey and some honeycomb—you see what I mean about his attitude?). I had heard horror stories about this procedure from some folks, and from others, I’d heard it was not so bad. I was dreading it and hoping that having given birth to two babies without drugs had prepared me for it. John told me that he always tells his patients that if he hurts them, they get to call his mother, and no one has ever called his mother. I was skeptical.

Incredibly, the worst part of the whole procedure was when the nurse tried to start an IV so I could get just a little bit of morphine before the procedure began. I’d already had blood drawn from the normal place in the crook of my left arm, so she didn’t want to start one there. She tried one in my left forearm but couldn’t get the catheter to advance, so that one was blown (and now has a GIANT bruise about 4 inches long). Then she tried my right forearm and blew that one, too (another bruise). I don’t have bad veins. She got another nurse, who finally just went back to my old reliable spot where I’d had blood taken earlier in the day. She got it on the first try.  (Needless to say, if I’d had any doubts before this about getting a port, my mind was definitely made up then. I do NOT want to start chemo every time with someone having trouble starting my IV. No, thank you. Port, port, port.)

And really, the rest of the bone marrow biopsy was remarkably easy. The hardest part is trying to stay relaxed—it’s not very easy when you are lying on your stomach with half of your bare butt sticking into the air. It’s a wee bit of a vulnerable position to be in. And if you’ve ever had trouble relaxing after someone tickles your back, this is kind of the same thing. Whenever anything touched my back, I reacted by tensing up, which really doesn’t help. The only part that hurt at all was when John put the lidocaine in. Obviously the needle puncture hurt, and then he had to tap the needle down into my bone to get more anesthesia way down in there. This was hardly pleasant, but nor was it anywhere near the ranks of drug-free labor. Plus, John kept me talking the entire time and had soothing music playing in the background, which helped keep my mind off of what he was doing. He took probably 20 minutes just to get all the anesthesia in there, so by the time he was done, I really felt nothing with the biopsy itself. When he did the aspiration (where he pulled out the marrow), he just told me to take a deep breath in. I did, and although I could definitely feel the sensation of the marrow being removed, it wasn’t painful. It was just a really intense sensation.

It was over before I knew it. John kept his promise, which meant I didn’t get to call his mother. Too bad. If her son is any indication, she is one awesome lady.  And the really good news is that I already have the results of the bone marrow biopsy, which showed that my bone marrow is cancer-free!

The next day, I had two different procedures to test my pulmonary function and my heart function. Some of the drugs in the ABVD regimen can damage the lungs and the heart, so they like to have a baseline so they can monitor any changes during the treatment. The lung test involved me doing some vigorous breathing into a tube attached to a computer. I felt a little too proud when the tech asked me if I was a competitive swimmer (uh, no, I’m just a half-hearted wannabe triathlete, but I’m glad you think so!). The heart test was another nuclear medicine scan (like the PET scan) where they injected me with radiotracers and then took pictures of my heart.  

After those tests were over, Ed and I met with the fertility preservation specialist. She is a reproductive endocrinologist who specializes in working with patients facing cancer treatment that might affect their ability to have kids afterward. I had already read that ABVD has a low risk of causing infertility, but I wanted to be sure we understood all the risks and all of our options.  

It was an unexpectedly difficult appointment, probably the hardest of any of these so far, largely because I felt the depth and breadth of Hudson’s absence more than at any other time since I was diagnosed. I realized for the first time that if Hudson hadn’t died, I probably wouldn’t even be concerned about fertility issues. If we could have a third after treatment, then we would, but if we couldn’t, then we would already have two beautiful kids, a big sister and a little brother, and we’d be perfectly happy and content with our family of four.

But we don’t have the big sister. Jackson has no living sibling. In yet another cruel twist of fate, Ed and I were again on the brink of trying for another baby in the next month or so, just as we had been when Hudson died, and here we are again, derailed. Why won’t the universe let my kids have a damn living sibling? Is it so hard?

The RE explained that ABVD is in the low risk category of chemotherapy drugs for causing premature ovarian failure. But she pointed out a most obvious fact that I had not yet considered. All this time, I had been cursing having to wait yet another year to get pregnant because I had really begun to like the idea of having kids close together in age. I was pissed that now Jackson would end up close to three years older than his younger sibling assuming all goes well with my treatment. And if it doesn’t go as well, the space could be even farther apart. Never did it even occur to me that every year that we have to put off getting pregnant again, leaving chemotherapy aside completely, my chances of being able to get pregnant go down just by virtue of my age. Nor do the REs know or understand whether an otherwise low-risk chemotherapy is more likely to cause premature ovarian failure in women who are closer to menopause in the first place.

As soon as we started talking after we left the appointment, it was clear that Ed and I both felt the same way: we had to try to preserve some embryos. Who knows? Maybe I’ll be cured in 6 months and we’ll be pregnant within a year. Maybe. We’ve never had trouble getting pregnant before and I will still only be 37. Maybe. But maybe not. And maybe treatment will take longer. Or maybe I will relapse the first time and have to go through a harsher treatment that will make me infertile. We just don’t know. But what we do know is that we don’t want to get two or three years down the road and find ourselves unable to get pregnant for whatever reason and look back and wish we had done this.

I am shaking my fists at the universe that we are even in this position. That Hudson died. That I have cancer. That Jackson doesn’t have a big sister. That his chances of having a little sister or brother are decreasing as we speak. Before I had my own babies, I sort of always thought that if we had so much trouble getting pregnant that we were facing the choice of IVF, that we’d probably adopt before going that route. And yet here we are. I can’t explain it, because it doesn’t really make any sense, knowing what I know about plenty of amazing families with both adopted and biological siblings or adopted children only, but having lost Hudson, I feel so strongly that I want Jackson to have a biological sibling. I don’t know why it feels so important, but it does. So important that I have been going through logistical hell (and taking the IVF nurse with me) to try and figure out how we can get some of my eggs harvested before starting chemo while also trying to move from DC to Chapel Hill, travel to Florida for four days for my race, and time my chemo treatments so that I can hopefully make it to a legal writing conference in California with my future colleagues at the end of May. I probably can’t bend cancer to my will, but I’m certainly going to try. The one very bright spot in all of this is that we have incredible insurance that will cover all but a few hundred dollars of the cost of all of the medications and procedures that will lead to a few embryos for us to store in case we are unable to get pregnant on our own when all of this is over.  

So after driving back to DC on Tuesday night for what I thought would be our final week there, I flew back to Chapel Hill this morning to meet with the IVF nurse, learn how to give myself all these crazy injections, and try to plan how and when I can get all the necessary monitoring done when I’ve got to be in three different places over the next two weeks. Right now, it looks like I’m going to have to be seen at an infertility clinic in DC on Monday, start giving myself daily injections that night, move from DC to Chapel Hill on Tuesday, be seen at UNC on Thursday, travel to Florida on Friday (with all my injectables, mind you), be seen at an infertility clinic in St. Pete on Saturday (I know, this is getting insane, isn’t it?), race on Sunday, fly back to Chapel Hill on Monday morning and be seen at UNC on Monday afternoon, get my port placed on Tuesday morning, continue getting monitored at the IVF clinic the rest of that week, hopefully get my eggs harvested around May 6 or 7, and finally start chemo on May 8, which would mean my conference at the end of May will be on the tail end of my 2nd 2-week chemo cycle, so hopefully I’ll feel good enough to go. I’m exhausted just thinking about it. You can see now why chemo is almost going to feel like being on vacation.

I have been writing for what seems like forever now, and I am so tired. I’m sorry for all the narrative, but it feels important to me to try to document this experience as I go (and I’m already behind several days as you can see), including with pictures as we get further down the road. So there may be more journal-like entries mixed in with the reflective ones as we keep figuring out how to navigate yet more unfamiliar terrain.

But it still doesn’t feel as unfamiliar and dark as it did when Hudson died. Nowhere close. And I’m thankful for that. Every day, I wake up, I look at my One Good Thing bracelet, and almost like putting on armor, I put on my Hudson necklace and my turtle earrings (which are sadly broken right now). I think about my sweet girl and how much I love her and miss her. And it makes just about anything else that could happen that day seem not so bad. In a tragically and horribly bittersweet way, I have her to thank for that.  But how I wish it were different.

Wednesday, April 11, 2012


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.

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, 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.

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.

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