Adventures with Hodgkin's

Today was my second chemo for week 7, and it was relatively uneventful. My mom drove me down and that's a good thing for two reasons. First, there was another couple in infusion center who were sitting there busily using their Palm Pilots. And they had newer ones than either Kevin or I have--they had color. (I still haven't broken this news to Kevin.) The second reason is that I had some shopping to do and as wonderful as Kevin is, stopping at the Stanford Shopping Center is *not* on his list of things he considers medically necessary. The shopping was for gifts, not for more "chemo clothes" because I feel I am now in the "almost done" stage no matter how I slice it:

*I'm one week away from finishing my second cycle, and that means I'm two-thirds of the way done. I've only got two "heavy" chemo weeks left (#9 and #11) in the last cycle.
*I'm three weeks away from tapering off one chemo drug, the steroid prednisone. (And after all my rant about weight gain and that drug, I learned that the weight gain from it is water weight, so I angered the gods for no reason complaining about weight a while ago!) Oh, yes, apparently this drug is responsible for my mood swings, but you can just ask Kevin and he'll assure you I HAVE NOT HAD ANY MOOD SWINGS, HAVE I DEAR!?!?
*And this week's chemo probably hasn't burned off many of those 48,000 white blood cells.

Now, I was going to go shopping for others--I did have gifts to buy, after all. But shopping with my Mom is an exquisite experience. It's like having your own personal shopper! She rustles through the racks with me, helps carry the possibilities to the dressing room, takes the clothes--in the proper outfit order--off the hangars for me to try on, puts clothes back on hangers, gets new sizes, and also offers honest yet loving opinion. And when you're standing under fluorescent lights with no hair, well, you need that kind of opinion because it's awfully hard to look in the mirror for long without having your eye drawn up to the glow of your pate. (Maybe that's why some men don't like to shop?)

But none of the clothes purchased today will see the inside of Stanford. A book my friend Ellen sent suggested always wearing the same thing to chemo so you can burn it when you're done. And I'll tell you what--the things I bought specifically for chemo and have work there are definitely candidates for destruction of some sort. I get queasy pulling them on. Similar to how some of the drawstring waist pants I wore when I was pregnant make me feel like I've got a huge gut. The power of suggestion is pretty amazing. I wonder how many other chemo patients have the urge to vomit when the get in the parking garage?

I was looking through the documentation I got from the doctor for my disability claim and they describe me as 'pleasant'. This amuses me. (And I'm sure it amuses a few other folks, too, but you can just keep your smart remarks to yourselves.) But what I want to know if they call anyone 'unpleasant'? What other adjectives do they use? Is there a standard list doctors use?

Our anniversary was Wednesday, and Kevin surprised me by whisking me off to Stanford in style--we took a white stretch limousine! Yes, one of those wonderfully cheesy ones that has the glowing, color-changing neon inside it. We were, I believe, the only people to arrive at Stanford that day in such a fashion. A patient saw us getting out and asked why, but then he shrugged, smiled, and said, "Why not?" Kevin told him it was our anniversary, but I wanted to tell him that it was part of my health plan. It was an absolutely wonderful anniversary gift. On the ride back home we toasted ourselves and took the scenic route back to the city. Have I mentioned that I have the best husband in the world?

The chemo went fine, my white cell count was 48,000. Yes, 48,000, which is about three times a normal, non-cancer-patient's 14,000 to 16,000 white cell count. No wonder I wanted to stay up all night and clean the house on Tuesday.

For me, apparently, feeling good and swearing go hand-in-hand. (No surprise to those who know me, very amusing to those who realize I have a toddler--more on that later.) But I've done my share of crying in the doctor's office and the infusion center. I cried last week (white cell count 800) when they asked if I was depressed. (They did not take that as a 'yes'.) And I've cried in the infusion center when they had trouble putting the IV in, or told me I'd need more Neupogen or Procrit. What else do you do when they can't find a vein? Mine have valves in inconvenient spots, and they run and hide when they feel the needle. Since I don't have the karmic control to call them to the surface, it's very frustrating. Swearing is what I really needed to do, because your veins sure don't pop up to the surface when you're all blubbery.

But I'm not a crying-type person--ask anyone! I'm a swear-er! And I'm good at it! Good enough to get dinged professionally not once, but twice, for swearing! But swearing in the infusion center seems, well, blasphemous. You're in a room with other people, and I'm generally the youngest. The infusion center just has curtains they can pull around you, not a cone of silence they can drop down to protect all the unsuspecting patient ears around me. But Wednesday I could not stop myself. I swore when Kevin beat me at Scrabble. I swore when I couldn't get my chair to recline. I swore when the tape pulled the skin on my arm. (Must be those #&%$ing white blood cells.)

I had had my anti-nausea medication (which makes me slightly loopy) and I was feeling guilty about swearing, so I engaged the clown in conversation, without swearing, when he came in. (I did not talk to his puppet; I was swearing, not slapping people.) And I managed to refrain from asking him if he knew where the children's hospital was, although Kevin beamed me a note on my Palm Pilot (yes, we are a geeky couple!) that said, "or the psycho ward?" but we both turned our evil laughter into kindly chuckles at his attempts at humor.

One of the hardest things about this whole 'adventure' has been the fact that when I don't feel good I can't take care of Conor. That's what moms do, right? Dads play with them and we take care of them. Nine times out of ten, if I walk into a room, I make sure he's wearing the appropriate amount of clothing and then I calculate when he ate last. Kevin will walk in and tickle him or throw a ball to him or join his game. And when I don't feel well, I just cannot muster the energy to get a two year old to eat or take a bath or go to bed. Well, sometimes I can put him to bed because we sit in Mommy and Daddy's bed together and read our books, then Mommy turns out the light, sings him songs and falls asleep. He's been good enough so far to stay there with me until he falls asleep too, even though he's big enough to open the door himself.

The day Kevin brought me home from the hospital after my surgery, Kevin left me and the babysitter and Conor at home and went to the grocery store. While he was gone, the babysitter was giving Conor a bath and I walked in the bathroom to see how he was doing. He stood up when I came in and I saw his little arms flex on the side of the tub and then he fell down before either of us had a chance to do anything. The babysitter scooped him up and it turned out he had split open his chin on the side of the tub on the way down. It wasn't a small split either. And I remember feeling so helpless as the babysitter rocked him and I was trying to figure out what to do. I could barely move and was chock full of painkillers, but I got our first aid kit (such as it was). But beyond direct pressure, what was there to do? So I had to call Kevin (luckily he was on his way home) and we all took a trip to the emergency room.

That was when I realized that I wasn't going to be able to take care of my own child until I got better. And, in perfect honesty, I wasn't going to want to take care of him because I knew I couldn't do it worth a damn. (Although I'll admit that even if I was in perfect health and he split his chin I would still call Kevin and it would have turned out the same way, but it sure didn't seem like it at the time.) And not taking care of him means that I won't know what he liks best, or how to do certain things. (Granted, the nanny will always know things I don't but I've reconciled myself to that.) That until I got better, I'd be someone who helped when they could. And although Conor doesn't really know what's going on, he no longer says "Mommy go work" when Kevin and I go to the hospital. He walked into a door when he caught sight of my bald head. And although he's thrilled to have all these people around, and he definitely prefers Kevin for some things as he's grown older, he still wants me and is frustrated when I am too sick to be able or want to take care of him. Sometimes I wish I could explain it to him, but then I catch myself and realize that it would be even harder if he knew what was really going on.

This sounds rather pitiable, I'm sure, but it is certainly a lot better than my earlier worries about 'Conor's Pathetic Life As An Only Child'.

I must have irritated the gods again, because as soon as I was done complaining about weight, I got a gastro-intestinal thing that made it very hard to eat, and was probably responsible for dropping my white cell count to 800. I was so tired that I slept in the waiting room and again in the examination room. I got chemo on Wednesday anyway, because it wasn't the drugs that drop the white cell count. But it means more Neupogen, more than I've had to take before. The doctors say I just have very sensitive bone marrow, but I know it's because I was getting entirely too flip about the whole thing.

Cindy's here from Austin for a visit, and it's wonderful to have company. We've had social visits all week, too, and it's been great. John and Deb brought their 8 month old son and a tasty lasagna dinner on Monday, and Jean brought spaghetti and sauce on Tuesday. Wednesday Staci came by with another gift--she's my weekly Santa. I've been so wiped out that I wasn't sure how long I'd last during the visits, but there's something energizing about talking with someone whose days fly by--it makes me realize that time is relative and this will be over before I know it. It's a great distraction for me to have real conversations with people--ones that don't involve side effects or pills or anything medical. Of course we talk about what's going on with me, but there's so much else to talk about, too. And my folks are around (there is just some thing so comforting about having your mom do your laundry), and even when I'm dead tired I like hearing a houseful of people around me.

On the hair front, I went from thinning to thin to monkey head. So Kevin, Cindy and I shaved it off this morning. I was going to leave it stubbly, but Kevin went for the 'all gone' as Conor would say. It feels weird--the skin is very soft and warm. I did leave a little in the front--some bangs and "sideburns" above the ear so with certain hats it looks like I have hair. But I've been wearing scarves and the head wraps Cindy sent, and they are much more comfortable. I still need to get the bandanna and big gold hoop earrings to make it a look. I'll get some pictures up here soon, so check back.

I spent the weekend in the expected nitrogen mustard fatigue state. My parents took care of Conor and Kevin took care of me. He's been extremely patient, especially since I hold him personally responsible for having to take the Neupogen. Poor guy. Not only does he have to administer it, he gets blamed for it, too. And he's been staying on top of the other medications I have to take, as well. He bought me one of those old person pill dispensers and sat with me while I filled it up for the week. I have got to get over this whole "If-I-don't-take-drugs-I-must-not-be-sick" attitude. It's counterproductive, to say the least, especially when it comes to pain and nausea.

Well, it's time to address the elephant in the room. Weight. As anyone with an eating disorder can tell you, the only ways to lose weight are diet, exercise, and disease. And every book I've seen so far, save one, points out how thin you get on chemotherapy. I think it's only fair that I should come out of this whole thing thinner. Right? I won't be fit, but I'll take thin. During the first month I did lose some weight, but that's because I was so sick with fevers. Now I'm putting that weight back on. Why? Because Stanford V chemo contains an innocuous little drug (Prednisone) with the side effect of craving starches. Yes, I dream of scalloped potatoes, french fries, baguettes, potato chips, pasta, pretzels, the Valentine's cookies Beth sent; if it's made with white flour or potatoes, I want it. Luckily, there's the heartburn that keeps me from eating like that. And I've got to start eating better. But there are other rules for eating when you've got a low white blood cell count; for example you can't have salads--could be microbes in there. I assume that the same rules as pregnancy, plus the no salad and some others, apply. So it's hard to figure out what to eat sometimes--it's not like I can just whip myself up a Brie and bologna sandwich. (I'm kidding about the Brie and bologna--that would be two separate sandwiches.) I should probably talk to the nutritionist at Stanford.

I don't want to go off on a rant here, but I just can't help it. Everyone has been so wonderful and supportive--except the HR department at work. Since I can't go to work with a low white cell count, and I can't work from home with chemo-brain, I'm going on short-term disability. So I call the HR department and ask what needs to be done to make that happen. They point me to the company's internal website, where there are documents and policies and forms that will answer my questions. Great, I say, what about blah blah blah? Go look at the website, I'm sure the answer is there, she says. Oh, and did I mention that they want them RIGHT AWAY? Now, I have filled these forms out before for my pregnancy leave, but I assumed that someone there had done this more than ONCE and might be able to help me. Nope. And when can I get these forms in? Hmmm, I think to myself, it would be bad karma to point out to this person, in full CAPSLOCK, that IF I AM TOO SICK TO WORK, reading 30 pages of two different policies and filling out 12 pages of forms is not going to happen anytime soon. But they've got me over a barrel, and they know it.

We were rescued by the social worker at Stanford. She took all the forms and filled them out for me. And then went over the answers with me to make sure they were accurate. I don't think I've ever been more grateful to someone in a hospital since I had my epidural during labor with Conor.

And on another happy note, Bill and Monique are officially engaged. They were kind enough to call me that evening and verify the rumors I'd posted, Matt Drudge-style, here. I'm thrilled for the two of them and we offer our heartiest, "Best Wishes", however, I haven't told them that they can only get married in June if I have more hair than Bill.

Chemo today went fine--the PICC line worked like a charm. I was still feeling great, and my blood counts showed why. White cell counts of 12,000! That's nearly the normal level of 14,000! I was joking around with the doctors and nurses; probably the first time they've seen me smiling in their offices. But the chemo did what it was designed to do, and by the time we got home, the combination of it and a day in the hospital just had me wiped out.

But I came home to such care and support that I ended up crying in the bathroom for all the right reasons. Kevin stopped on the way home so I could go shopping. When we got home, my parents were at the house; my mom was cooking dinner and my dad was taking Conor for a walk. They'll be here for the duration of my treatment. I had a package from the truest Southern belle I know, Cindy, chock full of the best hats that I could ever want and then called to say she was booking tickets to come see me. My sister-in-law Beth and her family sent a package of Valentine's Day and other goodies that Conor and I dove into immediately. My sister-in-law Linda left a message asking when she could come down and cook and clean and take care of Conor for us. Elizabeth from my mom's group dropped off a tremendous dinner, and more moms are lined up to do the same. Staci stopped by to see how I was doing and brought me a great book--my weekly Wednesday gift. Cheryl called because she'd just heard and wanted to know how I was doing. Kevin brought me flowers, five gladiola stems, to celebrate finishing my fifth week. And it's not just today. Conor loves to give me kisses and hugs. My brother, John, and his wife, Krista, offer medical advice and explain the tests and procedure in detailed layman’s terms.Ellen checks in with me nearly every day to hear how I'm doing. Karen sends me long emails to remind me of the absurdity of the work we do. Monique sends me internet humor and chain letters and is coming to see me in April, when we can drink wine together. Candus lets me vent and be mean to people and is coming out in March. Charlie left work early last week to pick up a prescription and deliver it to the house. Eugenia reminds me how sweet little boys can be and of the happy food dance. I have cards and letters and calls from all over--my friends, Kevin's friends, my parents friends--and I've kept them all so I can go through them when I get down. (Having chemo-brain makes them seem newly arrived, too!) I've had people I don't even know, other Hodgkin's survivors, offer to talk with me. People I work with have sent wonderful emails wishing me well. I've received gifts and gift baskets with everything an invalid could want! We've had offers of child care, food delivery, and housecleaning. If there is anything that will banish those "what next?" and "I cannot possibly do this" thoughts from your head, it's things like this. And I know I've left things out! I don't know how I can thank everyone, but I am certainly going to try.

I've been feeling good the past few days--almost normal good. Just in time to get slammed by round two tomorrow when the second cycle starts off with a bang. So while I have the time and inclination, let me say a few words about hair. I hereby apologize for rolling my eyes when men who complained about losing their hair. I stand in total admiration of a Cotulla, Texas, gentleman who, whenever he removed his Stetson from his gleaming dome, had the comedic courage to ask, "How's my hair look"?

Losing your hair is just weird, especially when it happens rapidly. My head looks smaller. Significantly smaller. See for yourself. And washing hair that's falling out isn't easy--I was leaving squeaky clean little toupees in the shower drain while the hairs left on my head avoided the shampoo.

Right now I'm down to the barest minimal coverage that I could still go out in public without a hat (okay, if only to a punk bar at night). The term 'whitewalls' comes to mind. I noticed that the little hand mirror I kept in the bathroom to check out the back of my hair was missing, and I thought Kevin was just being kind. Turns out he was searching the heating vents and ducts because Conor keeps standing over them saying, "ball fall down".

When I was but a young and foolish child in the 80's, I shaved off half of my hair as a fashion statement and left the rest of it long-ish. (And I kept that asymmetrical style, too, probably longer than it was stylish and amusing.) I had comments about when was my brain surgery, etc. My mother hated it. I thought I looked cool. When it grew in and I thought I was ready for another hip haircut, I went back to my stylist, who now had what my roommate Eugenia and I called 'the fork'. She had a crew cut with four 3 inch spikes of hair across her forehead that stuck straight up. Her hair was nowhere near this radical when I first went to see her, and I foolishly ignored that warning sign and pointed to a picture in a magazine of a model with very short hair with long spikes of hair sticking out all around. Think 'many forks'. I left the salon thinking it had gotten much breezier and went to the library to study. Once I started touching my head, I could not stop crying. I don't know how I got home, but only Eugenia could tell you the depths of my despair because I have blocked it out of my memory. All I remember is that she was kind enough never point out that it's not a good idea to choose a cut from the magazines in the salon, that my new hair is what the picture looked like, and did I SEE the hair on the woman who cut mine?

So I'm going to lose my hair. And if I continue to get my butt kicked by chemotherapy like I have in the first cycle, it won't matter much because I'll either be looking bad enough to warrant a bald head or I'll be in bed and the bonus will be that showering won't be so critical. Except for one thing. There's a summer wedding on the horizon, and I just know I can guilt my friend Monique into making me her matron of honor for two reasons. The first is obvious. Who'd deny a sick friend her dearest wish? Yes, it's the cancer card! All-powerful and always re-playable! (I'm sure the Make-A-Wish Foundation has a laminated version I can use.) The second reason is known to her and those nearest and dearest to her and all I'll say about it is that I'll wear the heels.

Now my hair may be an issue for the wedding, but I see three options. First, think hats, big British-style hats. Very chic. Second, and I'd only do this because I love her, I'd get a wig. I'll let Kevin pick it out, of course, because this is a Texas wedding and he's always liked long hair and this would be his only opportunity for that. Third, if I've got at least a crew cut, I could just go as (whisper behind your hand) "that's the one from San Francisco".

Some women say that losing their hair is the worst part of chemotherapy. I'm not going to rank the side effects until doing that won't tempt the gods to allow me re-rank them by reintroducing me to them. I'll just be thankful that, as our good friend Paul has said, our saving grace is that we can always fall back on our dynamic personalities.

We had a dinner party last night, a potluck with a group of friends from the city. This is a semi-regular event, and after the holiday dinner party (exquisitely hosted by Jean and Charlie), Kevin and I decided we should host one in our soon-to-be-remodeled kitchen. (I was actually hoping it would be a pre-demolition party, but our renovation schedule has hit another snag. But that's another story.) Anyway, Stacey pinged us with an email suggesting a get together on the 9th, and I volunteered our services as host. Stacey was our cruise director, keeping in touch as the date got closer, rounding up the invitees, and suggesting who could bring what. During this time I was sending her emails asking her to organize everything, saying things like, "I'll probably be pretty useless when it comes to the helping out; I plan on lounging around looking vaguely glamorous while you all feed and entertain me!"

Stacey rounded up a great group of folks--she even got a date for Conor--and assigned items on the menu. Kevin and I, responsible for the main dish, went to the local butcher shop. Where we were sold nearly an entire cow, assured that it was required to serve 12. (Note to self: Remember that the butcher has a financial stake in serving size recommendations.) We got the meat in the oven (using a fail-safe recipe claiming to work for any size rib roast--more on that later) and cleaned up a bit.

I was feeling pretty good. I put on my evening loungewear (sans maribou mules) and hat. Makeup too. Everyone was arriving, people were in the kitchen putting their dishes together or having a drink in the living room. Stacey's husband Steve was sitting on the sofa, and he looked over on the end table and saw a book (I meant to put them away) called "Chemotherapy and Me". Immediately underneath it was another book on the same subject. At this point I can only imagine the look on Steve's face as he saw me in my hat and put these things together.

I don't mean to pick on Stacey and Steve. They're such nice people and this had to be such a *&^%ing surprise--I mean, hey, come on over to Cancer Central for dinner! And I don't know why I expected that they'd know, except that I assume everyone knows what's going on with us because, well, it seems like that's all we talk about around here. Stacey doesn't have an unkind bone in her body, but I know if I have been in her place, I'd have had a few choice thoughts for such a slacker hostess. If someone had sent me an email and offered to host something and then said they weren't going to do a damn thing, oh, I would not have been nearly so gracious--I would have bitched about it. And if my husband put it together while sitting on the sofa while I was back in the kitchen talking to other people, he would have set a land-speed hurdle record getting back there to tell me to shut my mouth. And that's why I find this so damn funny--because if the situation had been reversed, I'd have been the worst human being on the planet--I'd still be trying to think of new ways to apologize!

But Stacey is a better person than I, and we had a wonderful time. Conor's date, Jean, brought him a Valentine balloon and her mocha chocolate cheescake was even a bigger hit--he ate nearly an entire piece. And he asked for some more "yummy cake" for breakfast, too! Me, being the not-so-perfect mother, gave him some for breakfast. He, being the perfect child, wouldn't eat it until after he'd had his cereal and banana. But before we had breakfast, he had me sit down on the bottom stair with him to explain "Where people?" When he went to bed, things were in full swing, so maybe he expected to see it still going on? Or folks passed out on the sofa?

The dinner was great, even though we had to eat all the side dishes before the meat was ready. My highlight as hostess was when I got to announce that dinner was ready because the meat had stopped moving. The failsafe recipe we had for standing rib roast apparently doesn't work on "any size" because our 18 pounds of meat wasn't cooked in the time allotted. Kevin saved the day with his exceptional carving skills and a little extra roasting, we have plenty of leftovers (Beef Stroganoff anyone?), and our butcher is laughing all the way to the bank.

Today was the last chemo of the first cycle--only two more four-week cycles to go! God, I hope that sounds more positive than it feels. One-third done sounds good, but 8 weeks sounds even longer. Actually, right now I keep thinking that in two weeks I'll be halfway done. Weird how the mind works.

I had the PICC line put in on Tuesday and got to use it for the first time Wednesday. Like any medical procedure, it's a combination of the banal and the terrifying--"turn your head to the left and let me know if you hear water in your ear"!?! It went smoothly and I got a good placement on the inside of my upper arm. I watched Scooby Doo while Kevin watched them put it in. (I'm not ready to hear his play-by-play on it!) The port makes it definitely easier when it comes to getting chemo, but it will be a pain in the butt during the rest of the time. However, I'll take the pain in the butt factor for easier chemo. Kevin and I joke about how I'd be the envy of heroin addicts everywhere, too.

I still have to take the Neupogen, and they may monkey with dosages of other stuff, too. It makes me feel like a bad patient. I mentioned that to Sheila, our oncology nurse, and she pointed out that bad patients didn't follow patient care recommendations. Good patients do, although they don't have control over how their bodies react to the chemo. (Again with the difference between the medical and lay definitions.) She said that 10% of the patients on the Stanford V chemo sail right through it, and another 80% have some problems. Then there are the 10% like me, that just have one thing after another. I'm glad she told me that; I was starting to feel like a failure at this! It's hard to mentally reconcile all these issues with getting better. What I'm really paranoid about is whether all these side effects I'm having are any indication of the efficacy of the chemo. Of course, this is a question that just keeps me up at night instead of asking the doctor like any intelligent person would do. Kevin, ever the amazing suppport system, has nudged me to get a list of such questions together to ask the nurse and follow up with the doctor next Wednesday.

Other good news on the side effect front (I swear I was trying so hard to avoid mentioning specific side effects, but this one makes me so happy) is that a non-narcotic painkiller had taken care of all but the twinges of bone pain from the Neupogen. I'd resigned myself to another five days of Darvocet-popping haze, but this stuff (Naproxin) is amazingly effective.

My hair is getting thin--I'm shedding like a dog! My mom and I went out in search of hats, but the first store we went to only had visors. VISORS!?! Luckily we found two options at the next place; trench-style bucket hats. I've pulled down all my Polartec hats from the winter clothes because it feels kind of drafty around the ears, and I get cold even when I'm inside the house. But I haven't been wearing any hats yet because they just make more hair fall out and I'm trying to keep what I've got as long as possible. I could probably sit down with a brush and get it all to come out in about 20 minutes, though.

This last round of chemo wasn't so bad; but then again I've been on painkillers. I'm taking Neupogen, which kick-starts white blood cell creation--with the emphasis on kick. If you don't know how you take Neupogen, I'm not going to spoil it for you, but let's just say I've got the best husband in the world. He really takes good care of me. (Yeah, we wish it was a scented oil that had to be massaged into my body, but no.)

One of the drugs I take for nausea has got to be the candidate for worst packaging. It comes in plastic bubbles on plastic and foil sheets attached to cardboard cards in a box. And it doesn't pop out of the foil, either. You have to take the bubble thing off the cardboard, rip open the plastic and foil sheet while not managing to fling the damn pill across the room. And this drug is for people with the very common side effect of numb fingertips. Who says irony is dead?