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.