Archive for November, 2007


November 25, 2007

Well, I did it.

More accurately, *we* did it.

There’s a picture below from part way through the process, and the full series of pictures can be found here:

half-way there

Friday night, Brian, Cathy, and I plunked me in the tub and pulled out Brian’s beard-trimmer (which, purchased by me for Brian in a major feat of precognition last March (or I may simply have been getting the most out of a bargain) included a full set of accessories for trimming pretty much any kind of hair men typically have. We did not use the nostril-hair trimmer.)

As you’ll see from the photo album, we had a lot of fun while we were doing it – in spite of the shell-shock look I am wearing in some of the photos, I’m really pretty pleased at how I look bald – well, mostly bald. Because I can’t use a bladed razor currently, due to being on the blood anticoagulant, and because my electric razor doesn’t give as good a shave as a bladed razor, there’s actually quite a bit of stubble there. We did try Nair, and believe me, that is not a good thing to use on your barenaked scalp – particularly on a newly shaved, previously pampered girly-scalp.

The funny thing about stubble is that (as my friend Sue warned) it acts like Velcro. This is not always a good thing. While it helps keep slippery scarves and knitted caps on your head, it can also do things like prevent you from moving your head on the pillow. The deafening roar of stubble rubbing on a pillowcase is also a sleep-preventive. And it itches.

Fortunately, I expect the majority of the stubble to leave of its own accord in a week or two. Well, OK, actually with a little help from its friends, the chemo drugs. But in the meantime, I’ll just learn to live with it.

Sadly, we haven’t yet done the henna tattoo. Cathy came up with a great dragon design, and after we finished the cut, we started getting set up to do the tattoo. Fortunately, before we’d smeared my scalp with any goopy, slimy stuff to transfer the design, we read the instructions on preparing the henna, and realized we should have started the whole process in the morning. Not only do you have to let the henna sit for two hours after mixing it up, you have to leave the paste on the skin for six hours after applying it. So we’re going to do it later – it’ll depend on how this week goes for both Cathy and me; we might have to wait for the weekend after next, since I’ll have just had chemo on Friday this week.

Remember I’d been complaining about not having the promised steroid high? Well. I also seem to have avoided a lot of the worst side-effects of chemo, at least for this first one – mostly I had reflux, and felt fatigue and brain-fogginess, with occasional bouts of mild nausea (easily dealt with by eating a little, or resorting to anti-nausea drugs), a few other gastrological symptoms, and a bit of moodiness. Cathy, who is a cancer survivor herself, told me that she’d stolen my steroid high last Saturday, but then paid for it by having a fever and other miserable symptoms for a couple days. Now that is a true friend!

I hope that you all had a lovely Thanksgiving. We enjoyed ours, spending Thanksgiving day with our friends Sharon and Gary, also including Bill, Kevin, Jasmine, Keeko, and Robin (and lots of incredibly good food!). We had a second Thanksgiving at our house on Friday, with Cathy, Wally, and Augie the Dorky, again with an incredible array of fantastic food that Wally and Cathy prepared. We also got to talk to family, and the only thing that would have made it a better weekend is to have been able to spend the holiday with our family as well as our friends.

I am thankful for many things, number one being Brian. The last few months have made me realize how thankful I am for my many friends (many of whom are also family) – friends who listen when I need to talk; who wait in the hospital while I am waiting for surgery; who make contact without waiting to hear from me first; who drive me to the doctor when I can’t drive myself; who share their homes and love with us; who share the benefit of their experience; who take me looking for cranial prostheses; who keep me laughing; who are willing to shave my head for me; and those who silently and publicly send their good will and thoughts and prayers. This is not an all-inclusive list – there are so many ways in which I have been shown friendship, but everyone I know fits in the above list in at least one way.

Thank you all.



November 16, 2007

What I want to know is, where the #*%# is my steroid high?

Everyone who’s had chemo has told me that they had a steroid high after chemo – some even said it was the same day and lasted into the next. I am still waiting . . . I had to take a long nap after we got home, and I was definitely ready for bed an hour ago, but I had to delay it in order to eat something to deal with the most major side effect I’ve had so far: my GERD is acting up.

My GERD (Gastro Esophogeal Reflux Disease) has been well under control with Nexium, and the Nexium is still doing part of its job – controlling acid. What it isn’t controlling currently is the reflux part of it. For anyone not familiar with this (weak-stomached readers may want to skip to the next paragraph here), having reflux is like vomiting in slow motion. I’ve used some Tums and some Rolaids, and tried one of the anti-nausea drugs they gave me, and each one helps a little bit. I’ve got one more anti-nausea drug that is supposed to be good to take at night since it makes you drowsy, so I’m going to take it tonight, very soon. Hopefully it will take care of the problem. Grazing also seems to help a little.

There is a metallic taste in my mouth, and a feeling that it coats the mouth and throat, but so far it hasn’t affected the way food tastes too badly. When I had lunch, I noticed some difference from the beginning of lunch to the end of lunch; but the food still tasted good. Many women say that food just tastes bad, or doesn’t taste at all – this may be coming, as tomorrow is supposed to be worse than today, and Sunday may be my nadir – it could stretch out to Monday – it’s anyone’s guess how I’ll react to the drugs.

My sense of smell is also heightened – again, not to the point where things smell badly when they wouldn’t normally, but perhaps it’s just that they’re more intense. It seems to me that intensity might become bad – too much of even a good thing might be overwhelming.

So that was my first day after having chemo – if I think about my hair, I notice some tingling in my scalp, but that might just be psychosomatic. I still haven’t decided when I’m going to shave my head. It might be as early as tomorrow, although I am going to need to get a warm cap of some kind, as the weather is getting cooler.




November 14, 2007

Welcome to the most recent installment of the popular soap opera, “All My Chillblains” (lived before a live audience).

In this episode, our heroine Julie finds herself playing out her recurring nightmare, in which she returns to the scene of her surgery, over and over, day after day. The curtain opens on Julie, standing in the lobby of St. Vincent Hospital East Pavilion, trying to remember where she has to go next.


I had to be at the hospital at 7:00 a.m. on Monday morning for a bone scan. After injecting me with yet one more radioactive contrasting agent (this one was called “Technetium”, really!), the tech told me to come back in 3 hours for the bone scan. The 10:00 a.m. bone scan was not too bad – it just involved laying on the table while it moved under the camera. The 2:00 p.m. blood draw was easy, once they found an unpoked place on one of my arms.

Monday early evening I received a call from my surgeon’s office rescheduling my next-day’s surgery from 10:15 a.m. to 7:15 a.m. My poor friend Cathy also had to suffer with the early morning since she was my ride to and from St. V’s. The actual surgery started around 9:30 (you have to arrive 2 hours early, of course…), lasted for one-and-a-half hours (they had a minor problem with a kink in the catheter tube that needed straightening), and we left for home at 2:30 p.m. after picking up some really nice pain pills from the hospital pharmacy. The worst part of the surgery was the pain in my back/shoulder/neck from the towel they rolled up and placed on the table between my spine and my right shoulder blade to position my chest and arm properly for the insertion. That alone required two pain pills, plus alternating heat and ice to make it bearable.

Wednesday I attended a “chemo class” in the morning – in addition to reviewing the actual process I’ll have to go through, we looked at the biology of blood, cancer cells, and anti-nausea drugs; covered the side effects of the drugs I’ll be taking; the importance of hydration and exercise to chemo patients; nutrition during chemo; how to deal with hair loss, both physically and emotionally; and the reasons I should immediately call the triage nurse (fever of 100.5 degrees or above is the most critical one). At one point, the nurse was describing how the goal of a particular chemo drug was to “kill, kill, kill,” and I nearly jumped to my feet and started jumping up and down yelling “Kill, kill, kill!”, but managed to keep my seat. It was a close thing.

Then, after I’d gotten home, my oncologist called – he had a lung specialist look at the refined thoracic CT scan; and then a whole group of lung specialists examined it this morning. Everyone agreed that not only did I have a pulmonary embolus (blood clot) in my left lung, it looks like there is one in my right lung, also. So I had to drive back to the hospital, get both an injectable blood thinner and a pill-form blood thinner from the pharmacy, and learn how to inject myself. The nurse drew about 7 or 8 vials of blood to do tests on my clotting factors to determine if I have a predisposition for clotting (in which case I’ll have to be on blood thinners for a very long time), or if it appears to be an isolated incident. Since the doppler ultrasound ruled out clots in my legs, nobody can figure out *how* I got clots in my lungs.

Tomorrow (Thursday), I have a fill/check-up with the plastic surgeon, and a support group meeting. This is the easiest thing I’ve got all week.

Friday is my first chemo – I have to put together a chemo kit, including a book, my iPod, my knitting, a pillow, some snacks, and maybe a blankie. For my second chemo, I’ll have to bring a warm hat. The chemo suite contains roughly 15 to 18 nice recliners, and they serve coffee and other drinks; and there’s a view, although it was too dark this evening when I was in there learning how to inject the blood thinner to see if it is at all worth gazing at for three or four hours at a time . . .

And I thought that was the worst of it – having to be at the hospital five days in a row (multiple times, some days). But I learned on Monday that I have to be back there on Saturday for my follow-on infusion of Neulasta, a drug that promotes white blood cell generation. That is a two-and-a-half hour appointment. Six days! I have to be at the hospital six days in a row!

At least I get a break on Sunday, before I have to go back in next Monday for more bloodwork to check the level of the blood thinner.

And I discovered today that I’m actually going to have 8 chemo sessions – both Brian and I thought that the reference to 8 included the Neulasta infusions; but it will be 4 sessions of Adriamycin, and then 4 sessions of Taxol. It really hasn’t been a great day, but oddly, all I can do is laugh. Brian suggested there might be a note of hysteria detectable, but all I can see at this point is the absurdity of it all.

Besides, the Games Party was great fun, even if I was totally wiped out the next couple of days; and today I had lunch with my friend Harriet – it was so good to see her! And the oncologist’s nurse practiitioner gave me a prescription for a wig. Life is good!

My plan is still to henna my head – Cathy is going to design a Chinese dragon for me, and do the henna painting, too. I’d been planning on shaving my head this weekend, and may still – but if I do, I’ll have a nice crop of stubble for roughly a fortnight. Choices, choices!



November 7, 2007

Finally it seems I’ve turned a corner in my recovery – I’m having very little pain, and although I still tire, it takes longer to hit me, and less time to recover, as well as that I can do more and more before I need a rest. I’ve been able to walk Robin around the 1/4 mile loop without fearing that I won’t be able to make it home, and yesterday, I began working a little bit, starting to go through the 754 e-mails awaiting me at work from the last 5-1/2 weeks! I was only able to focus for 2 hours yesterday, but today I managed a couple different sessions and worked for 5 hours, and actually did some work in addition to clearing emails.

At this point, I plan to continue to do some work from home up until Thanksgiving, and the next week start back in the office for as many as 32 hours per week through the end of the year. How much I’m able to work will depend on how the chemo affects me.

So far this week, it has been a medical comedy of errors.

Tuesday morning we showed up at the hospital for my chemo port installation surgery. Once admitted, they gowned me up, and had just gotten the IV inserted when my surgeon came in to talk to me. After describing what she would do during the surgery, and answering various other questions about it, she headed off to do the surgery ahead of mine. I realized that I had one more question, so Brian managed to find her before she left the pre-surgical ward and brought her back. I told her that I’d been in the hospital over the weekend, and that one of the things they had done was to inject me with a blood-thinner called Lovenox in case I had blood clots. She said “Oh, we have to cancel your surgery today, then.” If the surgery had been one day later, it would have been OK, but apparently the drug is still functioning up to 72 hours after injection (at least at the dose they gave me). The most likely problem would be that, since she was cutting directly into a vein to insert the catheter tube, I would have kept bleeding after she closed the incision, causing a major hematoma which could become infected, and cause the tissue around the chemo port to become infected.

So they removed the IV, let me get dressed, and sent me home. I now have my chemo port installation scheduled for next Tuesday, the 13th.

Then, this past weekend, of course, I was in the hospital having tests, one of which was a thoracic CT scan. Both the doctors at the hospital and the oncologist on duty told me I could cancel my CT scan that was scheduled for later in the week; and when my oncologist’s triage nurse called me Monday morning to find out about my hospital stay, she said that he had also agreed I could cancel the scan. After we hung up, I called and canceled my scan that was set for 2:00 p.m. on the 7th. Half an hour later, she calls back and in a very apologetic voice, asked me if I’d already canceled the scan. Turns out the doctor wanted to have a scan that focused on my thoracic spine, and to have a bone scan in addition. So she scheduled me to have a CT scan on: TA-DA, the 7th! Only this one was for 7:15 a.m., because some lucky sod grabbed my primo 2:00 p.m. spot. Sigh.

This morning, we drag ourselves out of bed, drive over to the hospital, fill out the paperwork, and the tech takes me back to the changing room. I get gowned up, and he comes back to fetch me. He asks if I know what the doctor is looking for, and I tell him that I believe he’s looking specifically for anything that might have caused my chest pain, including metastasized cancer. He says he’s going to go have a chat with the radiologist about it, and will be right back. 5 minutes, 10 minutes, no word. 15 minutes, 20 minutes, I’m drifting off to sleep on the tiny little bench in the changing room, when I hear the door open. Poor guy, he looks like he might be worried that I’ll be pissed – and it was a close thing. Turns out that they had the raw data from my weekend CT scan on their computer (I guess they archive stuff off to storage, but at some point longer than 5 days, anyway), so all they needed to do was refine the image to focus on the spine instead of the general thorax area. So they let me get dressed and sent me home – I thought it was pretty funny, but I felt very sorry for Brian, who’d gotten up very early to take me over. At least we hadn’t progressed to the IV point, or injection point.

Frankly, I’ve been a little concerned at all the toxic stuff that is being done to my body in order to kill a different type of toxic stuff – sometimes the cure is nearly as bad as the disease. X-rays, radioactive gas, radioactive contrasting agents, dyes, chemicals, etc. I’ve committed to getting through this in order to prolong my life, but I do worry that there can be future negatives to all the exposure to nasty stuff.

So I just listen to my guided imagery CD that depicts the chemotherapy drugs as golden healing liquids that burble through my bloodstream like a brook through a forest glade, pure, cleansing fluid that carries away the detritus; and hope that believing can make it so.



November 4, 2007

This story is called St. Vincent’s Massacre, but I’m not going to tell it with four-part harmony.

Well, for something like a year, I’ve had intermittent chest pain on my left side, and my doctor had ruled out heart problems with a battery of tests, and decided it was muscular pain related to the size of my breasts. As I mentioned previously, I’ve still been having the pains since the mastectomy surgery, so that seemed to pretty much rule that out.

Early Saturday morning, I woke up with a very intense pain in the usual place – it lasted about 10 minutes or so, then tapered off to “normal” levels (i.e., the usual 1-3 level of pain on the scale of 10, down from a 7 or 8). I managed to go back to sleep, and after I’d gotten up, I had various other symptoms (heart palpitations, numbness in my left arm, light-headedness, and tightness in my chest that felt like anxiety (even though I didn’t feel anxious mentally or emotionally)).

So Brian loaded me into the car, with my bag of knitting and a book, and drove me over to Urgent Care. Well, they got me right in, and stuck me all over with implements of detection, I mean, they stuck electrodes all over me, and they took an EKG. They gave me some children’s aspirin, and they handed me a piece of paper, and told me “Kid, go see the physicians in the Emergency Room.”

Remember St. Vincent’s? This is a story about St. Vincent’s. Brian drove me over to St. Vincent’s, where I was inspected, injected, detected, and selected, and all kinds of mean and nasty things. They took me into the pediatrics emergency ward, made me sit on a bed, and I was there two hours, three hours, four hours. I was there for a long time, and they said, “Kid, we’re admitting you.” Then I was categorized, prioritized, sanitized, and immunized. When they checked me out today, there was a binder with twenty-seven eight-and-a-half-by-eleven test results, with circles and arrows, and a paragraph on each one explaining what each one was to be used as evidence in diagnosing me.

In the end, the biggest worry was that I’d thrown a clot and had a pulmonary embolism. After a CT scan, an EKG, blood tests, urine tests, poking, prodding, quizzing, being slimed with ultrasound gel, breathing radioactive gas, and being injected with yet more radioactive contrasting agent, I have been certified as glowing with good health (well, except for the cancer, which in theory is gone). I told the doctor that this is why I usually ignore symptoms, because either it’s called ‘female problems;” it’s blamed on my secondary sexual characteristics; or it’s an exercise full of sound and fury, and signifying nothing. He reassured me that even though the medical establishment is baffled about my symptoms, at least we ruled out a lot of nasty stuff, and that if I experienced the intense pain again (which could be neurological in origin, since neither Vicodan, ibuprofen, acetaminophen, nor naproxen seem to affect it), I should call him and he’d see me immediately.

What I learned from this is to always shave your legs, because you never know when you’re going to end up in the hospital.



November 2, 2007

Woo-hoo! I just tried driving for the first time – it was both easier and harder than I would have expected. Because my Mini is so small, it turns out the the majority of shifting arm movement is from my elbow, which helps. However, I do have to push to get it into first, third, and fifth gears, and that definitely was causing movement that made the left tissue expander move around some. It hurt, but not as bad as I was expecting. We’ll see how the muscles feel after a rest, since they’re unused to that much activity at any one time. I took my friend Sharon over to the Tanasbourne Starbucks for a pumpkin spice latte, and if I’d overdone it, she would have driven home. We did have to work up a makeshift “pillow” (using a sweatshirt I’d left in the car) to put underneath the seat belt’s shoulder strap, because I can’t shift and hold it away from my chest at the same time, and I didn’t think to take my pink-ribbon pillow with me. I’m definitely not ready to drive for too far a distance yet, but I’m happy to know that I can start working my way back to doing normal activities, even if it’s slowly at first.

This afternoon I went in for a MUGA scan, which tested my heart pump action. Of the two chemotherapy drug combinations I can choose from, the Adriamycin/Cytoxin combination can damage heart pump action on a permanent basis, so they want to check to make sure that I don’t already have any problems in that area. If I do, they will put me on Taxotere/Cytoxin, which has its own problems – there can be neuropathy side effects including numbness and tingling in extremities, which usually disappears, but can be permanent in a small proportion of patients. Because both my work and my arts and crafts extensively use my fingers/hands, I really don’t want to have to deal with this effect. Other than that, they’re essentially the same, except the A/C combo is given every two weeks, and the T/C combo is given every three weeks. At any rate, the MUGA showed that my heart pump action is at 62 (%?), which is definitely above normal (normal is anything over 50). And I’m radioactive for the next 60 hours.

I also have to have a CT scan next week, which will be looking at my chest specifically, because I’ve had some undiagnosed chest pain for over a year – my primary care doctor did a bunch of testing to rule out heart problems, and she decided that it was muscular due to being large-breasted. Of course, I no longer have that to contend with, and have been having the pains since I had the surgery (to me, easily differentiated from the pains related to the surgery). I’m not really sure what they’ll be looking for, and I’m not really sure they know either.

Then I have to have a chemo port installed under the skin on my chest – that will happen Tuesday; so it’s just possible that I will start chemo as early as next Friday (assuming that they have the results of the CT scan back in time), but more likely the Friday after (11/16). The port has a tube that will be inserted into one of my veins (probably the jugular), and it will go all the way to the vena cava. The chemo drugs are pretty toxic, and they can damage the smaller veins in your arms, not to mention that since they can’t use the obvious ones in the crook of your elbow, they often have to poke you several times trying to find the ones in the meat of the forearm. Also, the direct flow into the bigger vein helps dilute the chemo into your bloodstream faster, and makes the whole process go more quickly. The Adriamycin is administered by a nurse in a hazmat type suit, because if the drug gets onto your skin, you’d probably need a skin graft to repair the damage. And they’re putting this into my veins?!?

So next week is going to be a busy week. If nothing else, I can feel as if I’m able to do something to fight back, instead of having to just sit here and recover.


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