A typical visit

Since many people have asked, I thought I'd give you a sense of what it's like when I get treated.

A bit of background: my port is a dual lumen port-a-cath in my left shoulder, just below my collar bone. I couldn't find a picture of the dual lumen port, but here's a single lumen:

The clear circle is the lumen - it's a sort of self-healing plastic, so that they can punch needles into it, but when they pull them out it never leaks. So instead of having one circle and looking like a spade, mine has two and looks like a figure 8. The tail is a catheter that threads through my subclavian vein into my superior vena cava (the giant vein that goes into your heart). The port makes it easier to draw blood, since I have terrible veins, but more importantly makes it so that the chemo gets diluted quickly once it's in. Apparently the type of chemo I'm getting can eat through veins if it's put into smaller veins, say in your arm. So I'm a big fan of the port!

Regular chemo:

I usually show up very early in the morning and head straight to lab services, where they access my port (i.e. stick a giant needle into my chest), dress the port with bandages since I have to leave it in for several days, and draw blood. Sometimes my port doesn't have a blood return (this is actually more common than not), so then they have to inject TPA (a kind of enzyme drain-o) to clear out the clog in the catheter. The TPA takes about an hour to dissolve the clog, so we just hang out and wait. There is an extraordinary amount of waiting involved in cancer treatment. Way more than I was expecting. So once the TPA is clear, then they can draw blood, which has to get run before I see my oncologist. The chemo I get (and I believe most chemo cocktails) destroys my bone marrow along with the cancer cells (also the cells in my mouth and gut, though not my hair cells!), which leads to low white blood cells, so they have to make sure my white (and red) counts are high enough before they give me my chemo. It takes about 20-30 min to run my blood, so then there's more waiting. They always check my vitals (weight, bp, temp, and blood oxygen levels), so if we're lucky they can do that while we wait for my blood. Eventually, we get in to see my oncologist and we go over my side effects from the last round and tweak my meds if needs be. And then I check in and wait for my infusion.

Once my oncologist writes the prescription for my chemo, it takes the pharmacy 1-2 hours to prepare it. But at least they have amazingly comfy (heated!) chairs for the infusion patients; the guest chairs are less spectacular, unfortunately. There are also volunteers that bring blankets, food, beverages, books, and all sorts of things past while you're waiting, which is very nice. I also get my pre-meds at this point, at least the ones that are taken orally - a ton of anti-nausea meds plus steroids. And they typically hook you up to saline pretty much as soon as you sit down (which then always makes me need to pee halfway through the infusion). Once the chemo gets there, I get to start my infusion. I'm on FOLFOX 6, which is a combination of Oxaliplatin, Leucovorin, and 5-FU. I get the oxali and the leucovorin via a 2.5 hr infusion, so they just drip slowly into my port while I sit there. Once that's done, then I get an injection of 5-FU, followed by the continuous infusion pump of 5-FU that I carry around with me for the next 48 hrs.

The pump is about VHS-tape-sized, and I wear it in a fanny pack across my stomach. Actually, it's a runner's hydration belt, but it looks like a fanny pack. I can run the tubing under my shirt, so it's less obtrusive, though the bulge from the needle into my port is clearly visible (as is the obviously medical device in my fanny pack). I typically feel reasonable the day of the infusion, worse the day after, and terrible the third day, but improving on days four and five. The anti-nausea meds make a huge difference, though by the end the steroids were starting to drive me a little crazy. Aside from the nausea, diarrhea and fatigue, the other main side effect is neuropathy from the oxali. Apparently oxali eats the myelin sheaths off your nerves, and it manifests initially as extreme cold sensitivity in your mouth, hands and feet. Basically, cold feels like electric shock. I can't eat or drink anything cold, so all my drinks have to be kept out of the refrigerator, and ice cream is strictly verboten. I wear gloves if I have to get anything out of the fridge or freezer, because it hurts to touch things that are cold. Slippers are an absolute necessity, as even regular room-temp tile is too cold for my toes. And washing my hands takes forever, because I have to wait for the water to warm up enough that it doesn't hurt.

The effects of oxali are cumulative, though they do typically recede with time. I'm now about 6 weeks out from my last chemo treatment and I can eat ice cream again, though my hands and feet still smart when they encounter things that are particularly cold. Because my treatment is split into 4 rounds of chemo, then radiation and surgery, and then another 8 rounds, instead of the typical 12 rounds all at once, I'm hopeful the neuropathy won't be as bad. Many people have to have their chemo doses reduced near the end of treatment because the neuropathy gets so bad, but the long-term disease-free rates are worse if you don't complete the full treatment. Eventually, the cold sensitivity morphs into constant tingling, followed by numbness. I haven't had to deal with too much of that yet, so I'm hoping it stays that way.

I am basically a sick mess Monday-Thursday of chemo weeks, but Greg has been good about getting me to take short walks every day to get me outside. And by Friday, I usually feel mostly human again. Every time it felt so good to feel not sick again - it feels similar to when you're getting over the flu and can finally enjoy being out of bed. It does definitely make me treasure the time I feel reasonable much more than I ever would have otherwise.

Baby pictures

I've mostly come to terms with the fact that I will never be pregnant. The gynecological oncology surgeon who moved my ovaries up and out of my pelvis so they wouldn't fry in the radiation, said that if I were his wife, he'd recommend doing a total hysterectomy when they go in to take out the tumor. The rationale for that is that I'll never carry a child, so why bother keeping my uterus around, given that there is a chance (albeit a small chance) that I will eventually develop uterine or endometrial cancer. My medical oncologist is against it, since the risk of secondary cancer is so small. Regardless, I've got a few months before surgery to make up my mind on that piece, and the point is that I'm used to thinking of and talking about my uterus as something expendable and useless.

But oh lordy do my friends' baby pictures on Facebook make me want to cry. I find myself in tears thinking about writing a short congratulatory note to friends with new babies, being jealous of their fertility and feeling robbed of my own. Greg and I had just started planning to start a family when I got my diagnosis, which somehow makes my fertility (or lack thereof) feel more like something that was violently snatched from me.

We completed an IVF cycle before I started my first round of chemo and have eight frozen embryos, and my amazing sister-in-law has already volunteered to be a surrogate for us if it is medically possible, so odds are good that we'll still be able to have biological children. And that at least provides some intellectual comfort, but does very little to blunt the emotional impact of looking at pictures of my friends and their partners glowing over their offspring. Even more than walking around with the needle in my chest and my pump in a fanny pack, tubing peeking out here and there, knowing that babies will be a long and fraught journey for us in the best case scenario makes me feel the incalculable losses that cancer inflicts.

I often barely have enough energy to get up to let the dogs out, so I'm very glad that we don't have young children as I go through treatment. But I do sincerely hope there are babies in our near future, one way or another.

No super powers

I'm now on my second week of radiation, out of a total of six weeks. It hasn't been too bad so far. The worst part is probably having to wear the pump all day, every day for six weeks. The pump is a VHS-tape-sized contraption that I wear in a fanny pack in front of me, and continuously pumps chemo (5-FU, to be precise) into the port-a-cath in my chest through a needle. The housing of the needle sticks up about an inch off my chest, and occasionally gets caught on things like seatbelts, but most of all makes it difficult to sleep. Also, the front of my left shoulder gets sore whenever my port is "accessed" (i.e. has a needle in it), which makes things like walking the dogs hard.

I was initially deeply apprehensive about having the pump 24/7 for six weeks, because it's the same pump and the same drug that I went home with after my regular chemo treatments, and I associated it so strongly with feeling absolutely miserable. Luckily, it turns out that the drug that really made me miserable is a different part of the cocktail, and 5-FU by itself isn't so bad. The main side effect is diarrhea, but, at least for now, immodium is sufficient to handle it.

The radiation treatment itself is entirely painless. I show up, change into hospital gowns, and eventually get called into the room where they scan my ID card to make sure they're giving the right radiation to the right patient. The first step is climbing up onto the table, which has a special cutout for my belly, so that my small intestines will fall down into the cutout and be further from the radiation field (apparently ovaries and small intestines are particularly vulnerable to radiation). Once I'm on the table, they turn on the laser cross-hairs and line my blue dot tattoos up with the laser marks, primarily by tugging on a sheet underneath me to move me where they need me to go. Then the techs head out, an alarm buzzer sounds, and I get a few seconds of radiation. I'm getting radiation in four fields, one from on top of me, one below me, and one on each side. Each field has a different lead wedge that needs to be inserted into the machine to balance the radiation dose, so the techs come in and out as the four different fields are radiated. Every Monday, they take a set of x-rays to make sure I'm still in the correct position. On non-x-ray days, I'm in the room for a total of around 8 minutes; x-ray days are slightly longer, but are still right around 10 minutes. By far the most time-consuming aspect is getting to and from the hospital in Boston traffic.

Tomorrow morning, very early, Greg will detach me from my pump so that I can really shower! You can't get the dressing over the port/needle wet, which makes showering difficult. We bought a hand-held shower head to replace our existing one, and tried the saran-wrap-and-tape approach that had been recommended by my nurse with reasonable success. I have to hang the pump (in a bag) on a hook outside the shower, and the tubing isn't all that long, so range of movement became a real issue. But overall it worked better than expected.

I get to take off the pump tomorrow morning because I have my weekly medical oncology appointment at 8 and my infusion appointment to get my new 7 day pump at 9. So it's okay if I'm off the pump for the few hours it takes me to shower, get to the hospital, meet with doctors and then get hooked up again.

October 7th (hopefully my last day of radiation treatment) cannot come soon enough!!