EPOCH + R, round two

This week was similar to my first round of chemotherapy. It took a few days for the tiredness to really kick in, probably because I started out feeling so much better than going into the first cycle. The thirst wasn't quite so strong (I think I drank about 11 8-oz. glasses of fluids a day, instead of 12). The muscle cramps were less severe, although they were spread out this time in my legs and forearms and the arches of my feet (the first cycle I only had cramping in my inner thighs). No buzzing in my ears at all this time, which was really nice.

My hair has continued to fall out; I sometimes think I look like the character Golem in the Lord of the Rings movies. My eyebrows and eyelashes are so far unaffected, which is a nice bright spot.

My food cravings have been different; for example, the first cycle I wanted hot chocolate every day. This time, I had hot chocolate on two days, but it wasn't as good. This morning, I woke up at 4am and microwaved some frozen minestrone soup, and wondered if I could get the partner to run to the grocery store for some orange juice (which didn't sound good at all during my first round) and grapefruit. Maybe when the store opens.

Starting in the break weeks, I've been having trouble eating salty or spicy foods because the inside of my mouth is tender. I really like spicy foods, and snacky-type foods that don't require preparation tend to be salty, so this has been a difficult adjustment.

I've given blood regularly since I was 18, and my heart rate has always been in the 80s. This week, my resting heart rate dropped to the 60s, which has felt very odd. I'm guessing my heart got a really good aerobic workout pressing against the tumor for so many months, and is now showing off how buff it is.

On Thursday, they told me I was anemic, with a hematocrit level of 29.5 (I think below 30 is anemic for premenopausal women). To give blood, they require a hemotocrit level of 38, which I have struggled to maintain since becoming vegetarian - my normal diet has a low iron content. The chemo drugs damage the intestine lining, so I'm sure reduced absorption is compounding the difficulty my damaged bone marrow has making red blood cells. There are shots they can give to help anemia. But, they do not give the shots if they are treating the cancer with intent to cure. Knowing I'll probably be more tired because of the anemia isn't fun, but it is pleasant to dwell on being cured.

Hobbies

I read novels voraciously in middle school, mostly science fiction and fantasy. My reading dropped off with the more time demands of high school, then in college I discovered high-speed internet.

Since I've been sick, I've again started getting novels from the library, most recently The Lady by Anne McCaffrey. A few chapters into the book, I developed a nagging suspicion that I had read it before. One of the young characters called a particular scene to my mind: her American cousin lecturing her about how having a menstrual cycle makes a woman fertile, and teaching her what contraception was.

About halfway through the book, this scene did actually happen. I've definitely read the book before, almost certainly in middle school. Yet, through the four-hundred-odd page book, I remembered nothing else from my first read. That one scene apparently made a deep impression. It makes sense, in a way: I grew up to become one of the major contributors to the birth control and menstrual cycle-related articles on Wikipedia.

Not that I've done much with them lately: my edit count has been declining since August (which, maybe not coincidentally, is also when my first symptoms of cancer appeared). I look forward to feeling consistently mentally sharp again, and re-starting work on those articles.

A mixed break (week 2)

I've felt much more myself this week. Increasing energy levels as the days went on, cooking, some aerobics, knitting some for the first time since before chemotherapy. But, my resting heart rate has been up around 100 again all week. Wednesday, when I woke up with pain in my right shoulder and realized that it also hurt to breathe, I was ready to start chemo round 2 then and there.

My painful symptoms have subsided (I guess whatever was resisting the tumor regrowth got stretched out enough to accommodate it) and I have really enjoyed this weekend. I feel more all over good than I have in months, and I think it will help carry me through the next cycle: treatment starting tomorrow (Monday) through this Friday, then two more break weeks.

Alopecia

I had gotten the idea that hair loss was going to happen over a few weeks. I didn't think too much of it when I started having more shedding than usual on Friday.

Saturday I felt like I was filling up trash cans with my hair. It's still coming out quite a bit today, but not like yesterday. I'm not sure if I'll be bald in another day or two, or if I'll stall here for another three weeks and then lose the rest of it, or if these hair follicles are going to tough it out for the rest of treatment.

What a change in just two days:

"Break" week one

The chemotherapy drugs I'm taking are all inflammatory; the steroids are given to help counteract that. The steroids also made my normally dry skin not like moisturizer for a while, and cleared up the eczema patch on my left elbow that I'd had since July. By Wednesday of this week my skin was liking the body butter again, and on Thursday I found a new eczema patch on my right arm.

My last dose of steroids was Friday night, and by Saturday morning I could tell I'd gone off them: I started to swell up and be tender to the touch along the back of my neck and up along the back of my jaw, along the top back part of my shoulders, down both sides of my spine, and down both sides from my armpits to my hips. This continued to get worse most of the weekend, and on Sunday the worst headache I've ever had in my life was added to the mix. Not realizing how bad the pain from the swelling was going to get, I waited way too long to start taking pain relievers.

The inflammation was better on Monday, and had completely cleared up by Wednesday. I'm not sure if it was my body's reaction to the chemo drugs themselves—so it will be just as bad next time—or if it was caused by the amount of dead tumor cells in my chest—which should mean it would be less severe next round. I guess I'll find out soon enough.

Saturday also saw the start of jaw cramps. If I put anything in my mouth - liquid or solid - the back of my jaw would cramp for a few seconds. The second bite or sip would also cause some cramping, but not as bad. By the third bite or sip, I could eat or drink normally. This annoying effect continued through Thursday.

I've been having lower back pain this week, too. Possibly from sitting on the couch with bad posture so much, and losing muscle tone in my back from not exercising for the past few weeks. I've also been getting a shot every day to help my bone marrow recover, and these can cause bone pain. One of the oncology nurses said the shot might also be the reason for the pain in my lower back.

The fatigue has been just as bad as last week, but I haven't had the need to sleep so much. With my extra time (and now that I've regained most of my range of motion in my right shoulder after having a port installed near there) I started doing some of my easiest workout tapes. They seem to have helped reduce my pain levels, and it feels like an accomplishment to be able to get back more of my normal routine.

Friday I had my hair cut into a pixie style. I'm ambivalent about how it looks, but have been really happy with how low-maintenance it is. I used to enjoy taking care of my hair, but the fatigue the past several weeks had turned it into a chore. I also like that my hair now doesn't move around very much: I had some scalp sensitivity during my chemo week, and am expecting that side effect to be worse next time.

This week has not been as much of a break as I was hoping for. Still, I'm encouraged by how few side effects I've had (I never have been nauseous, for example) and it is absolutely fantastic to be able to lie on my right side comfortably - something I hadn't been able to do since the beginning of August. Things are looking good.

Today feels like a heat wave

Thursday morning, I discovered my truck's battery is not capable of starting the engine when the temperature is -10º.

Friday morning, I was delighted to discover the plug hanging out of my truck's engine was a block heater, that despite having to be sanded before it would fit into the extension cord it did work, and having been plugged in overnight, my truck started even though it was -22º. A coworker commented that it was warmer in Alaska than in our town.

Looking at my local weather report, I see it reached -31ºF last night. (These are all actual temperatures that do not account for wind chill.) The local paper had said the record low—since weather reports started in our area over 100 years ago—was -28º. While it's neat we set a new all-time record, I'm glad I didn't have to go anywhere early this morning.

By the time our Bible study group met at 9:30, it had warmed up above 10º and everyone was delighted at how warm it felt. What perspective.

EPOCH + R, first round

My pathology report states I have diffuse large B-cell lymphoma. This type of cancer is usually treated with chemotherapy. My particular chemotherapy regimen is known as EPOCH + R, and is given in a three-week cycle: five days of chemotherapy, then two weeks off to let my bone marrow recover.

I started on Monday with the Prednisone, a steroid. 100mg of it, twice a day, through Friday. After my first steroid pills Monday, I went to the oncology office to get my first IV drip of Rituxam. This drug kills B-cells, the kind of cell that mutated to start my cancer. Reactions to this drug are common, and they've found that giving Tylenol and Benedryl right before the Rituxam helps to prevent and mitigate its side effects. Like many people, Benedryl makes me sleepy; the nurse said getting it in an IV drip tends to make this side effect more severe. It took four hours to get the IV drip of Rituxam, and I slept through all of it.

When I was done with the Rituxam, they gave me an anti-nausea drip, then hooked me up to a portable IV bag with a pump. This bag had the E, O, and H drugs of the regimen. I didn't like the carry bag that came with the pump system, so I bought a fanny pack to carry around; I was attached to this IV bag 24 hours a day. I went to the oncology office once a day for another injection of the anti-nausea medication and a new IV bag with the EOH mixture.

On Tuesday, the first side effect I noticed was a puffy face ("moon face") from the steroids. People who see me everyday noticed pretty quickly; those I don't see as often couldn't tell. The inside of my mouth has become slightly more swollen each day; it's annoying but not too bad of a side effect.

The next side effect I noticed was the thirst: for the rest of the week, I drank about 12 8-oz glasses of fluids every day - mostly water. My doctor had talked to me several times about how important it was to drink lots of fluids while on chemotherapy; one of the nurses explained that it's partly to help flush the chemo drugs, but mostly it's the breakdown products of all the dead tumor cells that are so hard on my kidneys. Another drug they have me on is allopurinol to help my kidneys deal with these waste products.

I've been easily tired since the end of October; all the tests/minor surgeries at the end of December and beginning of January exacerbated this. Going straight into the chemotherapy treatments I wasn't surprised that all I did at home was sleep, wake up to eat food my partner made, and go back to sleep. I have been able to continue work full-time, which has really helped me feel more normal through all of this.

Excitingly, on Tuesday my heart rate stayed in the 80s all day long. Since the week before Thanksgiving, my heart rate had been between 100 and 120 beats per minute almost all of the time, presumably due to pressure from the tumor. Even after less than two days of treatment, the cancer was already showing signs of shrinking.

On Wednesday I started to have occasional muscle cramps in my inner thighs; painful but not enough to restrict my movement at all. Muscle cramps are a listed side effect of one of the chemo drugs. My regimen is unusual, and not something my oncology office has a lot of experience with. The cramps combined with my really high thirst level made my doctor want to check my electrolyte levels (sometimes potassium levels get too high due to the dying tumor cells) and my sugar (the steroid I'm on can cause temporary diabetes). My labwork came back fine, though.

Also on Wednesday, I started having a sort of ringing/buzzing sound in my ears for a few hours after I got up in the morning. I had this effect this morning, too; the nurse I talked to about it believes it's a normal side effect. I've had some constipation and gas, especially Thursday and Friday. These are listed side effects, and have been fairly mild.

I've had pain or just uncomfortable sensations laying on my right side since August. I had a cough that started the week before Thanksgiving, which by mid-December became so severe I have been unable to sleep on my back or stomach - even taking codeine pills for the cough. Laying on my stomach also caused my heart to start skipping beats, a very disturbing sensation. Thursday night almost all of these symptoms were gone. Just the discomfort of laying on my right side is remaining, and even that it's difficult to say if it's the tumor, or the port I had placed last week. I am so, so excited to see this much progress in just a few days.

Yesterday after detaching me from the portable pump (yay!) I got a drip of the C drug (this took about an hour). I felt just kinda weird, especially in my chest area, for the rest of the afternoon and evening, and wasn't able to nap like I had been the rest of the week (though I was still feeling tired). I've noticed my waistline getting a little larger thoughout the week - I must have been retaining a lot of water while on the 24-hour pump. Last night I woke up at midnight, one, two, three, and five and produced prodigious amounts of urine every time. After the five am trip, my partner commented that my back didn't feel puffy like it had when we went to bed last night.

I get a break from the chemo for about two weeks now. There are some side effects I've been warned to expect. Being immunocompromised is one; the EOC and H drugs all have a side effect of damaging my bone marrow, where many important immune cells grow. I'll be getting daily shots of a drug to help my bone marrow recover until my lab work comes back to their satisfaction. Nausea is another: the IV anti-nausea drug they've been giving me daily lasts about 24 hours. The C drug I got yesterday can cause this side effect for up to 72 hours, so I'll be carrying my prescription anti-nausea pills around in case I need them.

Knowing my hair will fall out was one of the most difficult side effects for me to come to terms with. This is from the EOC and H drugs; they've already damaged my hair follicles. Hair shafts are lined with little pusher cells that control the rate at which the hair comes out of the skin; it takes two to three weeks for them to push the hair out once the follicle stops growing. The delay in this side effect gives me more time to deal with it, but nothing could make it pleasant.

What a week. And I get to do it all over again a few more times. Amazing modern medicine.

Hickman line

Last Friday, I had a Hickman line installed. This is a kind of central venous access port: a device running from inside one of the major veins that drains into my heart to the surface of my chest. As long as I have the port, I don't have to get stuck for IVs or blood draws. Putting the chemotherapy drugs into a major vein also helps dilute their corrosive effects more quickly; these drugs can be damaging to the smaller veins IV lines are placed into.

Some types of port (I think called portacath) are completely under the skin. These types do require puncturing the skin, but there's not the risk of missing or damaging the vein there is with a normal needle stick. The under the skin type has the lowest risk of infection and other complications and seems to be preferred. Because of my particular treatment regimen, however, my doctors believed a Hickman line would work better for me. This device has a catheter that comes out of my chest; it splits into two lines ("lumens") that hang down about four inches.

One of the symptoms of the tumor in my chest was that I could only sleep on my left side. I asked the surgeon to place the port so I would still be comfortable sleeping on my left side, and he put it on the right (the line exits my chest at armpit level about 2-3 inches away from my shoulder). The pain afterwards was never bad (I didn't take anything for it). But the location of the discomfort surprised me: I thought it would be restricted to my chest, when actually my shoulder movement has been severely restricted. Even now, a week later, I can just barely raise my right arm to a 90º angle without pain. Had the surgeon placed the port on my left side (he said this was where the normally place it, because the anatomy makes the surgery easier over there), I cannot imagine how I would have be able to sleep. It is an absolutely terrifying thought.

I was not happy with the care instructions from the surgeon or the discharge nurse at the hospital. Fortunately, I met with one of my oncology nurses right after my line placement: she put a Biopatch (a 1" round antimicrobial sponge) around where the line exits my chest, and covered the whole area with an adhesive patch that looks like Saran wrap. Now I don't have to worry about getting the area wet (and so susceptible to infection) when I shower. Another oncology nurse changed my dressing yesterday (a week later).

I finished my first five-day course of chemotherapy yesterday. Despite my fears and complaints regarding the Hickman line, I have been very happy with how it is working. I meet with the surgeon in another ten days to have some stitches removed, and hope to express my gratitude for making this part of my treatment a little easier.

Amazing IV technology

On Monday, as a nurse removed my IV line, I noticed all she was removing was a plastic tube - no needle. I asked about it, and she raved about the device: the needle has this catheter around it, and after the IV line is placed, the needle is withdrawn and discarded, leaving just the plastic tube in place.

When this woman first started nursing, they had to leave the needles in: this required tying patient's arms to boards to prevent any motion, which would puncture the vein all the way through. Even with the bound arms, they still had many incidents of veins punctured through both sides, with the IV drip going into the arm tissue. I caught on to the nurse's enthusiasm for the catheters very quickly.

On Wednesday I had another line placed, and commented on how neat I thought the catheters were. This nurse was impressed by a different aspect of the devices: their flexibility means they can be pushed further into the vein than needles. Where the needle goes in is a weak spot; the ability to push the IV fluids in further away from that weak spot greatly reduces the risk of blowing the vein.

I'm ambivalent about a lot of plastics; they leach chemicals that we are only now learning contribute to obesity, PCOS and related disorders, and heart disease. But a plastic that offers that much protection to my veins? I'm all for that.