Wigs, etc.

Sorry for the delay in updating. I've been either working, socializing, or taking a much-needed break to veg.

First up! My co-worker Colleen went wig shopping with me on Thursday. It was quite the excursion.

When I googled for wig shops in San Francisco, the top-rated place that showed in the listings was a place called "Rosalie's". It's way out on Columbus Ave, at the edge of North Beach, almost to Fisherman's Wharf. Colleen and I managed to snag parking right outside the shop (virtually unheard of) and wandered in.

This place was amazing. First, the place was simply jam-packed with stuff. Wigs competed with dresses and accessories for space. There were dress racks suspended from the ceiling--you'd have needed a hook to get anything down. And second, the many styles of clothing and wigs available made me fairly certain that Rosalie's is frequented by our transgender friends. We saw the Liz Taylor wig, as well as the Jaclyn Smith, and even the Dodie Rosecrans--SF socialite--circa 1970.

Anyway. We made our way through the maze of wigs and clothing and started to feel that unless I wanted something truly outrageous, this might not be the shop for me. And then, we rounded the final corner and came across at least 4 wigs that would work perfectly.

The man working the store asked me to sit down in one of the barber chairs situated in front of a mirror, so he could try the wigs on me. (This man was teeny: I'd be shocked if he weighed 90 pounds, truly. And if he is under 70 years old, I'd be shocked. But his hair and moustache are both still jet black, so he's still working it.) He tried on two of the wigs Colleen and I picked out and as he prepared the third, he said that after we were done with these four wigs, he'd like to try one on me that he had picked out. We tried on the four wigs and got two "maybes" out of the bunch. And then he tried on the wig he picked out. Herewith, the "Bobbi" (though you have to imagine that "i" dotted with a heart). Bobbi definitely out-ranked the other wigs and the longer I looked at it, the more fun it was. I mean roots? On purpose? So, we purchased the wig for a *steal*. Quality wigs typically start at $250-$300. When I asked how much the wig was, he seemed to be somewhat embarrassed and whispered, "$65". Um, okay, we'll take it!

To see the other two fabulous wigs I've got, as well as a shot of me sans cheveux, you can go here: Karen's Hair Looks.

I've also got some new chapeaux to show off (including a fabulous hand-knitted cap that looks a bit like a fuzzy blonde fro), but that will need to be another blog entry.

The rest of the week was good. Work got done and then Maggie and I enjoyed The Magic Flute at the SF Opera, along with her friend Siobhan, and her mom (and my friend) Dierdre. We had brunch in the city (Absinthe, for those of you who know SF) and got to the opera for a 2 p.m. show. Nice end to a pretty weekend.

I had my third infusion yesterday and Maggie accompanied me. She missed a few classes at school, but I feel that right now, we have to have some perspective on our overall outlook. She learned, I think, what I'd hoped she'd learn--it's not scary and it's a bit boring. I gave her a brief tour of the cancer center and then we both did a lot of waiting, with the occassional bit of attention. We checked in at 1, and Frank picked us up at 4:45.

Today is Halloween and lucky Frank will be opening the door and handing out candy. I will be firmly esconced somewhere in a prone position, watching trashy DVDs. Or, hmmm, maybe Lord of the Rings.

Oh, and Frank has the best joke of the week. I was telling him that I can't sleep on my right side because that's where the port is. It's uncomfortable to put too much pressure on it, and I'd hate to dislodge anything. So Frank says, (are you ready? It's somewhat nautical in nature) "You can't sleep on your starboard because of your port!" Get it? No? Ah well, you can google it if you're really curious.

Not Much to Report

This is my "good" week and things are going very well.

The weekend was a bit bumpy. I developed some stomach cramps on Saturday afternoon and so was unable to enjoy any of the three parties we were lucky enough to be invited to. Thankfully, Frank was able to make a brief appearance at two of the parties, and I was able to have lunch with the other party boy today, so I don't think we've burned any social bridges. :-)

The past few days have been mostly about Maggie--trying to ensure she's got what she needs in terms of time, attention, and anything else. She's been weathering this storm very well, I have to say. She's quite the trouper. She slept late Sunday (thank heavens, as she had stayed up until 3:30 the night before, on a sleepover) and then she and I cuddled and watched the end of The Age of Innocence. Then we went to Macys because they were having a Clinique bonus (you buy something and you get groovy little make-up/skincare samples and a cute little bag of some sort). She also wrangled some very fuzzy slippers and a dress out of the trip. But I got tired after only about an hour and we headed on home.

Meanwhile, on the hair loss front: I think by Friday I had lost about 3/4 of my hair and the remaining hair both itched and hurt. It was insult to injury and I couldn't stand it anymore. So, I took some hair scissors and cut off the remaining hair and had a brief cry. I don't mind being bald--truly. This pathetic stubble just looks so sad. Bald would really look better than this. Frank tried to help by shaving the rest, but my hair is so fine, he had to give up after we got the nape of the neck cleaned up.

The good news is that it no longer hurts (I'm convinced that it was the weight of the remaining hair pulling on the almost empty follicle that hurt) and the remaining stubble continues to fall out. So, in another week or so, I should be hairless.

And Frank is allowed to call me "Sinead", but most definitely *not* "Kojak". Just sayin'.

My lovely and wonderful friend Robert brought two wigs in to work for me yesterday. One is long and auburn with bangs (Susanne) and the other is a short, black pageboy with bangs (Anna). I will be grooming them both soon for occasional hat-free days. When I have pics (hopefully next week sometime), I'll post them. I'll also post a bald pic, just because, I mean, please. You've got to document this stuff for posterity, haven't you?

And Here We Are Again...

....on the other side. Mostly.

Day + 3 this time is much the way it was last time. My stomach is feeling a bit timid, but I'm drug-free and so feeling pretty good. I'm pounding the saltines and drinking the water, and even better--I'm not doped up on the sofa all day.

Tuesday evening, after the chemo, I was fatigued, but okay. Wednesday I was mostly okay, but fatigued. Thursday I slept and watched DVDs and ate some pretty bland food. Frank made pasta carbonara for dinner, which I enjoyed, but might have been a tad bit heavy for me. I didn't suffer too much, though, so, all in all, a good couple days.

We're lucky enough to be invited to several birthday parties this weekend, but I think we'll be seeing how I feel tomorrow before we make any social decisions for the weekend.

Meanwhile, my hair is mostly gone. I'd say I've lost a good 3/4 of it and it's so very sad looking. :-) I really wish it would just finish falling out so I could be done with it. I'm wearing lovely hats, including this very nice cap that Michael knitted for me (the pic is from before hair loss), and I'm sure the hats would be more comfortable without the pathetic itchy remnants of hair.

Two Down

Well, the chemo part is done, and now we just get the next couple days of fatigue, headache, hair loss, and (hopefully limited) nausea. So, I'll more sincerely feel like it's "two down" sometime around this weekend, I'm guessing.

Once again, the adriamycin gave me a minor allergic reaction, which triggered my asthma. No biggie, just interesting. And I'll probably add a benadryl or something to my mix of pre-chemo drugs next time.

I'll be working from home tomorrow, and Thursday (based on my experience last time with Day + 2) I'm planning to take the day off and wallow in DVDs (Jeeves & Wooster is pretty high up on the list). If the pattern follows last time, I should be mostly okay by Friday. Time for more finger crossing out there!

It's also time for a big thank you to all the friends and family out there who are taking care of us. The emails and cards, the groceries and baked goods, the carpools and flowers. Really. I'm not sure we always show the appreciation we feel. Please know how grateful we are and how loved we feel. Thank you.

My Hair Hurts

I'm not sure how many men will understand what I'm talking about here, but I'll try to describe the current sensation on my head. When you have longish hair, and you wear it one way (combed this way or that) for too long, if you comb it the other way, sometimes the hair follicles hurt a bit. A classic case might be when you have a relatively tight pony tail for a long day and then you let it down and it actually hurts, just a teensy bit.

My entire head feels like that. No, I take that back. The lower back of my head (where the hair is shortest) doesn't really feel all that bad--though it is not without sensation. But the top of my head and the sides... ooof. Anytime I move my hair, it hurts. It's not debilitating or anything, but it is starting to give me a headache.

This started yesterday and it simply reminded me of the other times in my life I've felt that sensation and all I needed to do was give it a good brushing to relieve the discomfort. So I brushed my hair and an hour later, it still hurt. Today, it hurts a little less than last night, but still I have the hint of a headache.

I'm planning to go wig shopping next week. ;-)

Lesson Learned

I'm guessing there's a reason that when the nutritionist was talking to me about diet, she did not include Mexican food from Juan's on the list of "rebuilding" foods.

I was in a truly cranky mood on Wednesday and so decided I needed Juan's for lunch to help comfort me. The words "big mistake" don't do the idea justice.

I have told my friends at work that if I even mention Juan's again in the next four months, they are not only to dissuade me from such madness--they are to slap me. Hard.

I had serious indigestion all night and most of the following day. It didn't really dissipate until last night. I don't think it was the spiciness of the food, per se, because it wasn't all that spicy. I think it was just the overall lack of any nutritional value in what I was eating. Loaded with fat and flavor, yes. But not much else, and my digestive system let me know how much it disapproved.

I promise I'll be good from now on. Really.

Numbers Are Good

I had my bi-weekly checkup yesterday with Dr. Kuan. My white blood cell count and platelets are within normal range. My red blood cell count is a bit low, but still okay, she says. Given that yesterday was the 9th day, she said that if my white blood cell count was going to be low, that would have been the lowest day. Other than that, I'm healing just fine from the surgeries and, assuming my numbers are just as good next week (they test my blood before every chemo infusion), I'm good to go.

I told her that I'd heard that the side effects were "cumulative", inasmuch as your body grows weary of fighting this stuff and the side effects become worse with each infusion. She said that was definitely true of the "numbers" (white blood cell, etc.) but not necessarily true of the nausea. I'm wondering if she's just trying to help me maintain some cautious optimism, because then we started talking about the inherent suggestability of some words/sensations (like nausea).

I told her about the poor ill man at last week's chemo orientation, and she told me about a patient she had when she worked in Houston. He lived outside of Houston and so had to drive in for his treatments. It got to the point where all he had to do was see the sign for Houston as he entered town and he became nauseous. Another patient only had to hear her name and he became nauseous. So, there you go (and there you are). The wonderful world of chemo side effects. :-)

....And Back into the Light

Whew. That was certainly an interesting three or four days.

To recap: I had my first chemo treatment on Monday. All went well and I was fatigued Monday evening and experienced some insomnia that night.

Tuesday I felt okay. A little light-tummied and tired, but otherwise, okay.

Wednesday? Ick. Not so great. I was still using the Emend (the finest in anti-emetic medications) but the nausea would not be kept at bay. So, I supplemented with another medication that just wiped me out. So I felt nauseous and dopey. Perfect. By the end of Wednesday, I was starting to feel better and was actually able to eat some real food (as opposed to the saltines, almond butter toast, and yogurt I've been consuming since Monday afternoon).

Thursday morning I felt pretty much the same, but without meds, so I took that as a very good sign. I stayed on the saltine/toast/yogurt diet and got through the day just fine.

And today, Friday, I feel very hungry. Yay! Frank made me some very tasty bran muffins with flax seed for breakfast and I might get really crazy and have half a sandwich for lunch. No, don't try to stop me... :-)

In other news, Frank and I attended the Chemotheraphy Orientation at the ABCCC last night. It was interesting (intentionally and unintentionally). First the intentionally interesting part. Among other things, we learned that a) cancer cells rapidly divide, and b) the way chemo works is to attack rapidly dividing cells. Of course, your system has other cells that are rapidly dividing. These include cells in your GI track and your hair & nail follicles. Which explains many of the side effects of chemo. There was a lot of other information, too, and it was useful, overall.

The unintentionally interesting part was when the pharmacist kept talking about the N/V (nausea/vomiting) side effects of chemo. She was obviously knowledgeable and experienced and knew her field, but English was not her first language. And so everytime she said "nausea/vomiting", it sounded a bit harsh and abrupt. She described the various stages of "nauseavomiting" explaining that you could have Level 1 vomiting would would not be very much, or you could have Level 5, which would be pretty much all the time. The man sitting to my left had not, thus far, experienced any of these side effects, but confessed that with our friendly pharmacist constantly saying "nauseavomiting", he was beginning to experience some pschosomatic symptoms. This did not seem to impress the speaker as she continued to say over and over "nauseavomiting". Finally, the gentleman stood up and said he thought he needed some air. Before he could get to the door, he started to swoon, and luckily one of the nurses was there to catch him. The poor man was out like a light. When we went to bed last night, Frank and I kept cracking each other up, saying "nauseavomiting" repeatedly—remembering the absolute oblivion of the woman who tortured that poor man into fainting. (And have I made you a bit queasy with that charming story?)

Sleep patterns are weird, but that's a lot easier to handle than the ickiness of nausea. Typically, it's Frank who's up at 4 or 5 a.m. each day. Today, I was up, too. I was very hungry and so had a small bowl of cereal to tie me over until breakfast. But I got plenty of sleep, so I'm feeling fine.

So, while I wrote on Monday, "One Down....", today, I feel that a bit more sincerely. Here's to hoping the next infusion isn't any worse than this one was.

Symptoms Update

Monday (infusion day) was pretty much fine. I had a low-grade headache for most of the day and that evening. I had some insomnia between 1:40 and 4 a.m., but otherwise, things were okay.

Tuesday I was a little light-tummied and my cheeks were flushed (I wasn't feverish, but I looked like I was). But I was able to go for a nice walk and I was mostly okay.

Yesterday? Ugh. On the one hand, I am happy to report that the anti-nausea drugs appear to be working. While I am occassionally feeing nauseous, I'm not getting sick. On the other hand, they kind of knock you out. I felt tired and or dopey most of Wednesday and that is just a drag.

I know, I know. I really should quit my whining. Imagine going through this without all the many anti-emetics available to me.... <sigh>.

Anyhoo. I slept well last night and have my fingers crossed for today.

One Down—Nine to Go

Frank and I checked in at the Alta Bates Comprehensive Cancer Center (ABCCC hereafter) around 8:30 this morning. Around 9, they took me to the VAD Draw room where I was swabbed and then they put the totally cool little hooked needle/catheter into the port. They drew blood for testing and then sent me back out to the lobby. I took the first of the Emend 3-day anti-nausea treatment pills and prepared to wait.

Typically, we're told, it takes them about 20 minutes to do the blood testing and then they start to gather your chemo meds, but they had some issues this morning and I didn't go back to the treatment room until about 10. No biggie, really. As Frank reminded me, this is the beginning of a marathon--there's no need for sprinting right now (i.e., chill).

I neglected to take my camera with me this morning (maybe next time?) so I shall endeavour to describe the treatment room. Imagine a large room, maybe half the size of a basketball court. In the middle of the room is a nurse station/counter. Lots of carts, and monitoring equipment, etc. scattered about. (Probably not "scattered". Probably placed. But to my untrained eye--scattered. I don't judge. I merely observe and report.)

Around the perimeter of the large room is a succession of glass door cubicles. There must be 20 or so of these little cubicles. In each cubicle are two easy chairs, a TV, a visitor chair, a bathroom, and cabinetry with supplies, etc. Also, primarily, of course, the automated IV machines that let them administer multiple fluids simultaneously.

I was seated and they took my vitals (again. Three times today I had my vitals checked. They are nothing if not thorough.) Jessica, the nurse, explained that first, they'd give me some anti-nausea meds with the saline IV. When that was done, she had to "push" the nasty Adriamycin (also known as Doxorubicin) through a syringe into the IV. It was the color of Kool-Aid or Hawaiian punch and it triggered my asthma. Just a bit of a drag, and Frank retrieved my albuterol inhaler from the car, just in case, but my body sort of picked up the slack and the asthma started to dissipate on its own, so I was fine.

It took about 20 minutes to finish up the two fat syringes (looked like about 25 cc's each) into the IV, and then Jessica put the bag of Cytoxan on the IV rack.

While we were patiently waiting (me with my fabulous elasto-gel therapeutic cold gloves, to try to minimize the effect of chemo on my hands and fingernails), the pharmacist dropped in to see if I had any questions about the meds they'd prescribed for me (three anti-nausea meds, in addition to the Emend I take the first three days of the infusion, and an antibiotic for if/when I spike a fever) and to make a list of everything I'm taking (including my asthma control meds).

He was pretty young and cute and very earnest and he typed up the list and printed a copy for me, so when I see a different physician for any reason, I can just whip out my list of meds for them. Most excellent.

When he was done, the nutritionist stopped in to talk about my chemo diet. First week is to "dextox" and to make sure I'm not taxing my system but ensuring I get what I need. Second week is the building week--lots of legumes and other non-heavy proteins (sardines, wild salmon, cottage cheese, eggs). She also recommended Glutamine powder the first week (yum!) and ground flaxseed. Oh! and the good/interesting news: she'd prefer I drink green tea, but that it not be decaffeinated. She doesn't like to have the tea any more processed than it need be. So, there you go. I *can* have a cup of tea in the morning.

When the Cytoxan was done, about an hour after it started, the nurse "flushed" the catheter with saline and then shot me up with Heperin (anti-coagulant, to prevent clots). She removed the needle and catheter and Frank and I were on our way home by about 12:15. One treatment done. Yay!

With all the anti-nausea meds, I'm being cautiously optimistic, and thinking I'll be fine tomorrow. But, we've been told that, if it's coming, tomorrow is when the nausea will hit. So, keep your fingers crossed.