Janet's Blog

Tomorrow I will receive Adriamycin for the first time. This is the scary bright red chemo drug also known as the "Red Devil."

Either Lita is right and I am afraid for no reason--she says she has successfully treated a 90-year-old lady with Adriamycin--or the warning stories are true and it makes people ill, causes fatigue, and makes your pee turn red.

She did actually say something to me about whether I could possibly work half-time, which worries me. Why? Will I need to?

I hope I don't experience fatigue immediately. I am tired of being fatigued. I also hope I don't experience nausea. I have such a fear and horror of the whole gagging and spewing thing, that I can actually vomit from anxiety. I am a bit worried that I will work myself into a fervor that anti-emetics may not be able to deal with.

Wish me luck.

On a completely unrelated note, Brian lost a giant filling this weekend while eating gummi bears. So when I went shopping with my mom Sunday, I brought him some gummi ghosts and bats from Harry and David. He also ate some of the Moose Munch (original dark chocolate...MAN that stuff is good) I got for myself. He is going to the dentist this afternoon and joked that he was going to pack the cavity hole with caramel corn. I told him he could bring the tooth chunk to his boss as proof that he needs to leave work early.

At least it would have been a good way to get the tooth chunk off of our bathroom counter.

Labels: Adriamycin, anxiety, Brian, Lita, mom, nausea

3 comments

To the person who Meeboed Me at 11:02 today, Hi! I'm sorry I was actually away from the computer and forgot to select "away" from among the Meebo options. I missed you by about 15 minutes.

To answer your question, no I am not currently in remission. I have blobby tumors in my liver for which I regularly receive Abraxane and Avastin. I am doing reasonably well, however. A year and a half ago I couldn't walk and felt sick all the time. Now (aside from baldness, gross fingernails, and an unrelated issue of the rear endal area) I feel pretty good and am not afraid that my bones will snap like so many dried twigs.

I am also able to receive offline Meebo messages; feel free to leave me a message (like Grace did--Hi Grace! I was very glad to hear from you. I hope things are going very well). Let me know who you are, too.

Rear Endal Update

I spent yesterday at the Emergency Room on the advice of my general practitioner, who consulted with the specialist at her office who suggested he wouldn't be able to do an internal exam either without causing pain and distress.

The night before, I took a very strong pain medication which resulted in my feeling sick that night and the next day. I was revisited by breakfast, and when we showed up at the ER, I had to ask Brian to get me one of the familiar pink bins immediately. I had difficulty explaining to the people at the reception area that I was not there because of nausea and vomiting: "I have--BLLLAAAAAAAARRRRRRKKKKKKKK--a fissure, or--GUUURRRRK--hemorrhoid or--URP--something..."

They were very concerned about the nausea and gave me Zofran. Then, after answering repeated questions about what I felt my symptoms were, I had external exams performed both by the ER doctor and the consulting surgeons. The first located what is likely the cause of my pain, thought it might be a fistula, and squooshed it. Then the surgeon located it, noted a fissure and that there was nothing to squoosh: "See that crater?"

The surgical team concluded that there was nothing warranting surgery at this time, and the lead surgeon pointed out that any surgical procedure they could do would have a high likelihood of some unfortunate consequences. I am reminded of the following from Monty Python's Life of Brian:

Pontius Pilate: He has a wife, you know. You know what she's called? She's called... 'Incontinentia'... Incontinentia Buttocks
Pontius Pilate: [Guards are laughing] Stop! What is all this?
Pontius Pilate: [Laughing continues] I've had enough of this wowdy webel sniggewing behaviour. Silence! Call yourselves Pwaetowian guards?.

I can't say I'm sorry to have avoided surgery, but the medical professionals were not able to provide me with any relief for my...issue.

"Use a Sitz bath." Great. I don't personally object to sitting my butt in a bath of warm water, but I'm not convinced this will help relieve my discomfort when water stings.

They also gave me a cream which is a vasodialator and is apparently made of hot sauce. I have used it once and do not plan to do so again.

I have concluded that the solution to what ails me is to simply never poop again. I find this a highly logical and practical thing and will put it into effect immediately. I am not joking about this.

Labels: Brian, fissure, hemorrhoids, hospital, Meebo, nausea

1 comments

They need to take impressions for retainers and remove the braces at appointments that are one week apart from each other. Since Mondays in May are rather spoken for, I will have to wait until June 4th to have the impressions made, and June 11th to have the bands taken off.

I plan to go to Famous Dave's for ribs and corn on the cob. Anyone care to join?

Also, I saw the dermatologist yesterday, who agreed that the first batch of creams was insufficient ("You should be way more dried out than that"), so I now have a cream that combines an antibiotic with 5% benzoyl peroxide, and a cream that is a stronger retinoid than the one I've been using. I am to use the antibiotic cream all over my face and scalp twice daily, and the retinoid at night only on my face.

They were doing "patient appreciation" at the dermatologist's office (the lab area was doing a bingo promotion for staff...it must be Wacky Activity Week at the hospital, or something), and I was invited by the checkin lady to help myself to some snacks and goodies. They had fun size candies, cookies, donuts, coffee, bottled water, and fruit. So help me, I really wanted an apple, but I will have to wait for that. I was then asked to fill out a "patient satisfaction" survey. Sure, bribe us with cookies THEN ask us how happy we are...devious. My cookies were pretty good, though. I was satisfied.

At my infusion, I discovered that my Decadron dose has been cut in half. I feel pretty good today, so hopefully will not have horrific symptoms and nausea. Brian called me at the appointment and brought carryout from Wendy's to my infusion. The nurses all got jealous and were wistful about the Wendy's at the hospital being closed down.

Baxter was a little spastic when we got home, but settled down eventually. He did an awesomely clever housetraining thing: he pulled his wee pad out of the crate downstairs, and then peed on THAT instead of on the carpet. (We had taken him out recently, but I guess when you gotta go, you gotta go.) We have a genius puppy! Now if only we could convey to him that chewing on hands/feet/wires/curtains/furniture is a bad idea. We should have named him Proteethius.

Labels: Baxter, braces, Brian, Decadron, dermatologist, nausea

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I saw an ad for Pink Ribbon Barbie for the first time at the University of Michigan Cancer Center at my infusion appointment.

I was resuming chemotherapy after a two month break, and decided to read a women's magazine promising me fashion advice and information on how to have the best butt ever. It was an older magazine from October, and had a feature on breast cancer prevention (I'd like to point out to people writing breast cancer awareness month articles that whereas regular self-exams and mammograms are key in early detection, they don't do SQUAT to prevent breast cancer...nobody knows how to prevent it, so call your article something else).

In flipping through the magazine, I turned the page and beheld Barbie's smiling face. Her impossible figure is bedecked in a dazzling gown; her hair is flawless. Sales of Pink Ribbon Barbie promise to help support the Komen Foundation.

That's great, and I certainly don't object to Pink Ribbon merchandise, but Barbie as an embassador for breast cancer is a little bit ridiculous. I sat in my infusion chair, bloated, eyebrowless, expecting that my nasty, scraggly hair would begin again to fall out, and praying that chemo wouldn't give me awful fatigue and nausea.

As an alternative to Mattel's Pink Ribbon Barbie (which was perhaps well-meant but not exactly on the mark), you might consider Breast Cancer Barbie.

"While Pink Ribbon™ Barbie® is dressed up for a charity ball in a gorgeous gown and has her flowing blonde hair up in a bouffant hair-do, Real Breast Cancer Barbie is spending the evening alone with her bald head in the toilet."

Breast Cancer Barbie more accurately reflects the experience of breast cancer. She has lost her hair, gained weight from the steroids given to prevent nausea, and has an IV for her regular infusions. She needs a pill case because the chemotherapy makes it difficult for her to remember if she's taken her medications or not.

Bidding is open now! This item is one-of-a-kind. Proceeds will help send the creator of Breast Cancer Barbie, Linnea Johnston, to the 7th Annual Conference for Young Women Affected by Breast Cancer, which is certainly a worthy cause.

Labels: baldness, chemo, eyebrows, infusion, nausea, pink ribbon

2 comments

Brian got worried while processing nursing and oncology journals at work, and contacted Lita, who left a message for me to call her back.

My blood tests may warrant new scans after all.

I am seriously considering begging for some alternative to the CT scan, which involves drinking copious amounts of barium, a substance which is also famous for being used to give people enemas. It's nasty. The last time I got so icked out over the prospect of drinking it that I yakked into the waste basket in the doctor's office waiting area. I love it not.

Brian seemed to think Lita will want me to have scans before my next appointment in two weeks. On the one hand, I think one might as well be prompt about treating problems. On the other hand, I wish I didn't know about any of this and could spend the next two weeks feeling brazenly optimistic before the deflating: your break may be over.

I don't even know what she's going to say, but I imagine my tumor markers are creeping up and the wonky liver results are "of concern." Then the scans will show increased tumor activity and there will be some head-scratching over whether or not this is resumed activity or whether things had started to progress while I was still taking Abraxane.

I would imagine the next step is to try Abraxane again to see if it continues to beat back the invasion. If not, we switch to another therapy and hope it lasts long enough for science to come up with new alternatives when the current one fails. Luckily I still have several choices.

I wonder if the follicles on my scalp will again go nuts and begin flinging hair onto my shoulders and pillowcase. I wonder if my eyebrows will fall out again. I have five o'clock shadow at the inner corners and actually tweezed the other day. I will be sad to see those hard-earned hairs go.

Labels: Abraxane, baldness, barium, blood tests, bone scan, Brian, CT scan, eyebrows, hair, Lita, nausea

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I should probably state that the bus ride is over. I'm feeling mostly better.

I still have lots of congestion and am on some antibiotics and have also been extremely tired. I don't think the antibiotics I pleaded for last Tuesday are working well (let's just say that today I asked Brian to buy some cranberry juice in my desperation) and will try to call tomorrow.

My left eye itches and I feel a little achey. The apartment is too cold. My right hand is a little bit chafed and my left thumb is somewhat crushed from trying to knit with squeaky chenille.

My hair is stupid and I have acne. My right hip is giving me some twinges and I can't remember when I last changed the fentanyl patch.

My lower back is sore. I've been feeling some tightness under my left breast and naturally worry about it. I keep having to sneeze and the wires in my braces are getting too long and poke into the sides of my cheeks.

But I can't complain.

Labels: antibiotics, braces, Brian, fentanyl, hair, hip, infection, nausea, tired

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I have no idea why. I stayed home from work (I called in, using one of my SHORT term sick days--which is actually kind of rare for me) and prayed for sleep to avoid having to deal with the queasiness and excess salivation that precedes an "episode."

Several occasions saw me drooling uncontrollably into the toilet. Nobody ever talks about that particular symptom of nausea. It's never that much of a surprise to throw up because of the whole saliva thing. When I slept I found myself embroiled in very violent RPG videogames of my dreaming brain's device. (It turns out that it's not actually that much fun to be Sydney Bristow, particularly not when everybody is shooting at you.)

Today at infusion they gave me more drugs--this time I got kytril, which is a very good anti-emetic, and zantac for my stomach. They did not make me swallow pills, either, which is probably a good thing.

When I complained about my sinuses, I also got an antibiotic for an infection. I had a cold last week and the sinus agony is living on. I don't have a fever, but I typically don't for sinus infections. Anyway, I feel much better and have a prescription for a couple of days' worth of kytril which I should take whether I feel nauseous or not. If you can stave it off it's better than trying to treat it once the nausea is rearing its ugly head and you are once again behind the porcelain wheel.

Labels: infection, infusion, kytril, nausea, sick days, videogames, zantac

1 comments

At my appointment this past Wednesday, Lita (my oncologist's nurse practitioner) told me that she had spoken at a conference in Chicago, where she mentioned me as an example of how well newer cancer treatments can work. I'm a case study!

Of course my name was not used, to protect my identity.

Dr. Hayes mentioned that he had recently had a conversation with Dr. Smith (the attending physician for the floor of the hospital where I spent the first two weeks of December), who was not at all certain that I'd turn out very well. "Oh, that poor lady," Dr. Smith took a dim view. I can imagine why he thought my case was dire: I was very, very ill in December, and tended to immediately vomit whenever he or his troupe of doctorlets came to visit me. I had what Lita describes as "the worst case of gastritis" she had ever seen, had a hip that broke as a result of metastatic disease, was undergoing radiation, and couldn't be moved without copious amounts of morphine.

What a very sad sack I was.

Well, things have turned around completely. Last weekend Brian and I went to visit my relatives in Cleveland, and not only was I able to stay on Aunt Barb's second floor (thanks for the hospitality, Aunt Barb), but I was able to show off my new, walker-free self to Grandma. "This is what physical therapy can do," I tried to tell her. Grandma is 93 and doesn't want to go to physical therapy. I can't say I blame her, but she does have exercises she could be doing at home. (Also, Grandma needs to wear her compression stockings. I highly recommend the toeless ones by Juzo...they included a little paper slipper that made them very easy for Brian to put them on my feet, after being shown how by the occupational therapist.) I was a little tired after walking back to the car from Jacob's Field on Friday, and walking around the Cleveland Zoo on Saturday definitely made me sore, but it was more the result of lots of walking after long inactivity, and nothing like the hip pain I experienced last year before being properly diagnosed.

Dr. Hayes also again mentioned the idea of taking a break from chemotherapy. I am more disposed to the idea this time. I will be undergoing more rounds of chemo and then in November will be re-scanned. If the downward trend on my lab results continues, and the tumors in my liver shrink further (to non-scary sizes: the largest is still around 4 centimeters), then I will be taken off Abraxane for as long as things appear to be ok. I will continue receiving Avastin and Zometa, which do not have the kind of side effects that chemotherapy does. I'm disappointed to have to continue going for infusions, but being able to grow my hair and stop getting Neupogen shots (which I've been weaseling out of having Brian give me) will be very nice. Lita called and left the latest lab results: the tumor marker which had gone down to 16.1 is now 15. The one which had gone down to 65 is now 45. (I will try to amend this with more accurate information when I get home.)

Now that things are going so well and that I am back at work full time, I've had a human resources snafu thrust upon me. I am very lucky in that my benefits allow me a very large number of "extended sick leave" hours at full pay. Unfortunately, I have only 20 of those hours remaining. I can use extended sick leave hours at half pay (which only contributes half to my retirement and benefits), or if I don't use extended sick leave hours at all for thirty days, they will be renewed to 1056 hours available.

However, those 1056 hours cannot be used for the same occurrence of an illness. Basically this means that in order to use the renewed extended sick leave hours, I have to develop some OTHER catastrophic medical situation aside from the chronic disease which for which I will be undergoing treatment for the rest of my life.

I could use my fifteen days of short term sick leave for my infusion appointments (these tend to take six hours or more) and other doctor's appointments. However, since I get infused roughly three times a month, within less than five months my sick leave will be gone for the year. Also, due to the library's interpretation of the university's Standard Practice Guide, taking three sick days per month could, in three months' time, give my supervisor (who, mercifully, is not interested in punative tracking of my schedule) grounds to write me up and fire me.

I could use my vacation time--which did not accrue while I was on extended sick leave--for my appointments, however I get only two vacation days per month and it hardly seems fair to deny me my vacation time in entirety because of a medical condition.

I could take time off without pay, which isn't appealing for the same reasons taking half-pay extended sick leave isn't a great option. Or I could rework my schedule to work longer hours on the other days of the week that I am not receiving medications intraveinously. Sure, that makes sense--let's have somebody on chemotherapy working longer hours to make up for it.

This is all patently ridiculous. I'm not a malingerer; I work hard and contribute positively to the library. I feel like I'm being punished for something utterly out of my control: I didn't choose to be afflicted by a chronic condition, and if I could magically stop going to as many appointments as I do, I'd be thrilled. However, there's nothing I can do about it, and I feel like the university's policy is designed to keep them from having to pay for somebody with a chronic illness.

Grounds for dispute under the Americans with Disabilities Act? I don't know.

Labels: Abraxane, Aunt Barb, Avastin, Brian, chemo, Cleveland, doctorlets, Dr. Hayes, Grandma, hip, Lita, liver, morphine, nausea, Neupogen, physical therapy, radiation, sick days, Zometa

2 comments

Once upon a time...

I recall encountering the story of Snow White (no relation to the nice lady with the 7 vertically challenged gentlemen) and Rose Red in my Andrew Lang fairy tale book when I was a child. I don't actually recall the plot of the story--I seldom went through it, due to my outrage at having a story with a character named Snow White who had nothing whatsoever to do with poison apples and dwarves. I don't know how the story goes, but I do know that the description of this particular Snow White is familiar: she has skin as white as snow, hair as black as coal, and lips as red as blood. I used to identify with this; my hair is very dark and I tend towards the pale end of the spectrum (fishbelly white). I'm not sure whether Rose Red matches her own name. It can't be easy to be red all the time. Maybe she was sunburned...they didn't really have sunscreen back in those days.

Today I got to be Snow White and Rose Red in the same day. I went for my third chemo treatment, and when they started it, I once again had trouble breathing and my face turned the color of a glowing traffic light indicating that you are moving through the intersection illegally.

It turns out that Taxol uses as its base a substance made from tree bark, and I do know that I am highly allergic to tree pollen (this time of year usually involves lots of nasal congestion and very itchy eyes, to which I say, "man, I'm glad I don't wear contacts"). As soon as I was able to get the nurse's attention, there was a fleet of nurses and the on-call doctor fluttering around taking my vitals, asking if I was ok, listening to my chest, and hooking up saline. They had given me a pre-infusion of benadryl to counterract the effect of the taxol, and ended up giving me even more. One of the nurses was surprised they weren't giving me this other chemo drug which has albumen as its base and fewer side-effects than taxol. "They want to be sure you've tried everything else first," one of the nurses said.

Gotcha. My insurance company did not want to fill my prescription for nexium unless I could say I have tried other antacids first, like tums, tagamet, prilosec otc, etc. Since I am not, strictly speaking, taking nexium as an antacid and rather am taking it to help control my nausea and vomiting, the hospital pretty aggressively negotiated for me.

After they gave me oxygen and I was feeling better, although woozy from all the antihistamines, they let me know that I was approved for this other chemo drug and would need to come back tomorrow to get that instead.

Another appointment is inconvenient, but at least I won't (hopefully) have breathing problems with this new drug.

Who knew a tree allergy could be so problematic?

Labels: allergy, chemo, infusion, insurance, nausea, Taxol

4 comments

I've been here before. I've been to a second dose of chemotherapy. The last time I had a second dose of chemotherapy I didn't suddenly have trouble breathing, have to have the treatment temporarily stopped, be given oxygen, and then have the treatment team paged.

Apparently Taxol can do that to you. I had some kind of reaction (which they assured me was not uncommon) and that I'd probably be fine and never have that reaction again. they gave me some benadryl to be on the safe side. It was very weird; it felt like my lungs just weren't working and my face turned beet red. I certainly hope it doesn't happen again; it delayed things and I ended up not getting out of there until after 6 p.m. I don't know why it is all of my appointments have to take so long.

The other day at Dr. Rodriguez's office, a patient showed up with a very demanding parent/guardian who insisted that the patient be seen despite not being in the system as having an appointment. We could hear the entire conversation through the walls, and I think his being there caused something of an uproar, disrupted the schedule, and I ended up being the last patient out of the office. Why? Why me? Do I need to be a squeakier wheel? Should I complain more? Should I loftily proclaim I will leave or threaten legal action if I'm not seen now? Those options aren't appealing; I think most people are just trying to do their jobs and don't want to be harangued. It's just that I'm getting a little tired of being passed over and having things run later than they ought.

My dose of 1 chemotherapy drug actually also involves a drug designed to inhibit new blood vessel growth (this is something tumors like to do...they nest somewhere and set up their own blood supply...little f#$%ers), which naturally have to be delivered separately. Then of course, to help with nausea, I am given some anti-nausea meds beforehand, two in pill form and one intraveinously, which delays the chemo. Then of course there are bags of saline to "flush" and since I had an episode, benadryl and more saline. Everything adds up to me sitting there forever. Blargh. I don't know what Brian did while I was sleeping. My mom had a book with her before she left for her yoga class.

Then of course the ride is long to get home. They are going to start offering infusions at the Canton health center, which will be much more convenient (I hope).

Labels: allergy, Avastin, Brian, chemo, Dr. Rodriguez, infusion, mom, nausea, Taxol

0 comments

This week I will be undergoing a new spate of tests including multiple CT scans and a comprehensive bone scan. This is actually good news: it is Dr. Hayes' opinion that since I am doing so much better now than I was in November when he first saw me, and he wants a new set of baseline tests.

Since I was doing so much better, I asked about whether or not it would be advisable to ride a motorcycle. I wanted to know specifically if the shaking engine would cause my pelvis to fall apart or if I might be ok given smooth roads and a careful rider at the controls.

His face contorted. "Weeeeeell," he said, "I don't want to tell you not to do it if it's something you really feel you want to do, but I'm a doctor and the consequences for you if the bike goes down are really bad."

We regarded each other.

"I won't tell you no, but all I'm saying is if you do, I don't want to know about it," he blurted.

I have since ridden behind Brian on his motorcycle twice, using the helmet that was specifically bought for me and which I'm pretty sure Brian won't want to use (due to the fact that it is pink). I am not graceful getting on and climbing off, but we are working on that and I'm sure I'll get better at it given practice.

Anyway, I have a spate of tests tomorrow, and next week will have a port inserted that will make it easier to draw blood and do the monthly infusion. I hate having an i.v. inserted almost more than anything. They have such difficulty getting the i.v. in the veins in my right arm/hand that when I have to have it done, it takes multiple tries, and is torturously painful. A port should make things easier, but getting the port inserted is some kind of surgery, and I'm nervous about it. Will they knock me out? I tend to react poorly to anesthesia. Will they try to sedate me but keep me conscious? That didn't work AT ALL during my liver biopsy, and the fentanyl patches might interfere with the kind of medication they want to use for that. I'm also slightly freaked out about having a tube in my arm at all times. It seems inhuman to have tubes and things winding their way around the interior of my body. Borg have tubes on the outside, but I can't help feeling that the process has begun.

After having my biological and technological distinctiveness added to the collective, I will immediately get to test out the new port by having my monthly infusion, because by that time they just won't have tortured me enough for one day. Then of course comes the monthly shot in the stomach, the one that renders me menopausal and is the cause of the hot flashes I've been suffering with some increase in frequency.

On the other hand, my acne has finally gone away. It could be my new skin care regimen, but it's probably the hormone therapy. My nausea also seems to finally be under control, although I have not regained my appetite for anything but sweets.

We are Borg; We demand your ice cream and leftover Easter candy.

Labels: bone scan, Brian, CT scan, Dr. Hayes, fentanyl, hormone therapy, hot flash, IV, liver, motorcycle, nausea, port, star trek

3 comments

This week I had the veritable motherlode of appointments. I had my usual blood draw/oncology team visit/infusion & pellet injection on Tuesday. I made sure to bring pictures of the wedding with me to show Lita, the Oncology nurse practitioner, who demanded them last time. (I also tossed in some of the wedding favors Brian's mom put together for her and Dr. Hayes.)

My mom picked me up, and they were running on time at the blood draw station, so I went in, had some tubes sucked out painlessly as possible (I love those people), and then came out to go to the next appointment. We went upstairs and waited for Brian. The check-in area was hectic, and there was about an hour to wait.

We did not get to go in early.

They called me to one of the rooms, and forty minutes later, Brian showed up. Finally, my mom decided she had to go, so she left and Brian and I waited some more. And we waited and waited. I chewed some gum. It lost its flavor, and still I waited. Finally Lita came in and checked how I was doing. I showed her the mini-album of pictures my mom put together and gave her the party favor. She was delighted with the candy, not having eaten lunch that day.

We talked about the nausea, and how that's really the only thing bothering me significantly at this point. We also talked about driving, and she suggested that physical therapy would be the place to address that issue, so I said I'd talk to Dr. Rodriguez (the physical medicine specialist) today about it. Then she took off to find Dr. Hayes and send him in.

We waited, and waited, and waited....

My gum lost its flavor, so I threw it away. I got cold and decided to put my shirt back on. I figured if the doctor wanted to use the stethescope, he didn't need me in a gown for that.

Finally he ducked in and asked if we'd seen Lita. Sure, uh, about an HOUR ago. He asked briefly how I was and then said he'd come back with her.

When they got back, and the doctor talked about how the "numbers are down" and that things are looking very good. He was talking about the presence of protein markers which indicate tumor activity: tumor activity is down, so I am getting healthier. He is a little bit concerned about the nausea, and ordered an MRI of the brain to rule out tumors there. "A hundred dollars on it being nothing," he said (or something like it.)

This makes me nervous. I have beaten stupider odds. But surely the universe would not do this to me again--that would just be cruel. They just have to rule it out. I hope they're ruling it out. "I'd stay and talk, but you're doing well and I need to go help the sick people," he said, and left.

So Lita suggested seeing if the MRI people I was going to see this morning could add another MRI.

I had to be at the hospital today at 5:30 a.m. Laugh uproariously, all ye who know how much of a morning person I am not.

They did add the other MRI, but it totally ruined my whole shtick about pretending to be a photon torpedo. They put stabilizer pads by my head and then affixed a thing that was more like The Man in the Iron Mask than Star Trek. It ruined my concentration and made me all tense. Then just as the test was beginning I suddenly realized I had totally forgotten to take my wedding band off. Was I wearing any metal? Duh....I thought for sure I had remembered everything. I could feel it buzzing to the MRI pulse and hoped that the machine wasn't going to explode or zap my ring finger off or anything like that.

The CT scan was over very quickly; it was just of the neck. The original CT and MRI scans were prescribed by Dr. Rodriguez, who wanted to investigate why I've been getting some numbness in my hands when my head turns a certain way. (I'm guessing "pinched nerve," but I'm not the doctor.) So after this morning, I had to go back to Ann Arbor in the afternoon to see her. She asked how I was, inquired about my movement, measuered my legs when I complained one feels shorter than the other, and wrote out a new prescription for physical therapy, suggested a driving evaluation when I asked about that, and told me that I can have an appointment with orthotist? Orthotician?

I have to get an orthotic wedge in my shoe. Sigh. At least this will help with the limping. I guess a wedge is better than having to get orthopedic shoes. My mom had to wear those when she was younger and the result was a woman with a full-blown shoe fetish that has yet to wane.

Labels: brain scan, Brian, CT scan, Dr. Hayes, Dr. Rodriguez, infusion, injection, Lita, mom, MRI, nausea, physical therapy, star trek, tumor marker, wedding

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I've tried at least four different kinds of medication to deal with nausea, hoping with each switch to find that magic thing that will keep me from spewing the contents of my stomach everywhere, or from dry-heaving the lack of contents until I can't do anything besides gag, shaking, over whatever receptacle was close enough to get to, if I was lucky enough to get to one.

I have actually made food choices based on what things will taste like coming back up. I'm worried that I will develop dislikes of foods I had previously enjoyed because I've thrown them up. I adore spinach dip, but there's nothing quite like picking spinach out of your braces...twice.

This latest medication does a fairly good job at keeping me from feeling nauseous, until the actual moment is upon me, and the maddening thing is that I haven't figured out what the triggers are for sure. I don't know why I'll be feeling fine one day and then suddenly the next, bleahrgh....

• I experienced one awful day on mine and Brian's honeymoon. It was the day after the very hectic Late Show/Spamalot combo. The next day I was so pukey ill I couldn't eat anything or get out of bed.


• Last Sunday I went to visit my mom's, something I hadn't done since Thanksgiving. I was nervous about the steps, but felt that I could handle it and was very glad to see Skippy, her very bulky chihuahua. Monday I felt horrible and couldn't keep anything down.


• Thursday I had a very busy day going to the dentist and various banks and offices, making official name changes and what not to Janet L. Elkins, and Friday I was miserably ill again.

Is it just activity level and stress? How on earth am I going to be able to control that? Sigh. Being able to wear smaller clothes is nice and all, but I need to be able to retain nutrients and things that will help me feel better. I've been advised to get a juicer. Does anyone have experience with those things? Will drinking lots of fresh juices make me healthy and give me unparalleled bushy eyebrows? Maybe my system won't like nutrition in juice form and will just spew it up again. Then I'll have invested money in a contraption that takes up space and is useless, rather like the pile of prescriptions in my medicine cabinet which have been tried, and rejected as just not performing well.

Labels: Brian, dentist, mom, nausea, Skippy, Thanksgiving

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I am extremely tired after the goings-on yesterday. I love more people and told more people I'd never met before how glad I was to see them, and it was true.

I was very happy to have help getting dressed and would like to thank the bridesmaids for being there. I think everybody looked great in their impractical dresses requiring complicated underwear, and think that anybody who agrees to such a duty deserves every amount of kudo possible. I'd like to thank Maria, particularly for marshalling people and getting everyone there in good order and for holding the bouquet at a crucial moment in the ceremony. I'd like to thank Wendy for helping me with the scary elevator; I was afraid the metal accordion-style door thing was going to crush her. I'd like to thank Melissa for being the photographer and helping to organize the group pictures. And I'd like to thank Sarah, who went on with the show despite not being able to attend the rehearsal and for being my witness (sorry I didn't tell you about this blog sooner).

I'd also like to thank the flower girl, Olivia, for doing a great job walking down the aisle, and who provided no small amount of entertainment value afterwards. I hope you like your flower-wreath headpiece.

It's Brian's job to thank the groomsmen, but I'd like to thank them too, especially my brother John, who doesn't know Brian very well but who agreed to participate. You are the best big brother anyone could ever ask for.

I'd like to thank Brian's brother Todd for delivering a very lovely, and mercifully brief ceremony, despite making me cry with the "in sickness and in health" part. If I could go back in time and change anything, I'd have stuffed a handkerchief somewhere about my person.

Thank you, Dad, for walking me down the aisle. I did not imagine I would ever have occasion to do such a thing, and am extremely grateful that you could be here to walk with me.

The table favors were perfect and included two pieces of Brian's favorite candy, Ferrero Rochet, and a small box of my favorite candy, the best candy in the world, hee hee. Brian's mom put them together, and I'd like to thank her not only for making sure they were sweet-tasting, but that they looked very sweet as well.

Finally, I'd like to thank my mom for arranging the whole event with perhaps less input from me than was helpful. I confess disinterest in invitation ink color and I am fearful of calling places for prices. Much of the planning went on while I was hospitalized, and the thought of planning tended to shoot my anxiety level to nausea-indusing heights. Through events yesterday my mom remained calm. I think what touched me most, however, is that when I got home from the rehearsal the other night, I came home and found my walker decorated with shiny irridescent fabric and beaded ribbon. It was funny and touching and kind of puts me in mind of what I must have been like in my own dress--I'm a little bit gimpy and broken, but anything can look pretty when dressed up for a wedding.

Also, the mashed potato bar and baby roast beef sandwiches at the reception were a big hit; I believe my enthusiasm regarding the food was vindicated. (Whenever I went on and got excited about the mashed potato bar that was going to be at the reception--you got your choice of regular or sweet potato with whatever fixins' you wanted--people would tell me, "uh, ok.".)

The cutting of the cake did not involve smashing pastry into any bodily orifices other than the mouth. I'm sure it was an accident that some icing fell into my extremely prominent cleavage.

Labels: anxiety, Brian, Dad, John, Junior Mints, Maria, Melissa, mom, nausea, Olivia, Sarah, Todd, walker, wedding, Wendy

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It's two days before my wedding, I'm still fighting nausea, and there's an awful lot of backstory to cover.

I discovered in the hospital that you can't depend on the caregivers to necessarily give the best care, whatever their intentions. It is vitally important to keep track of your own treatment and to speak up if something doesn't seem right.

Unfortunately, many of the things that don't seem right are just a natural result of being ill or damaged. I started suffering ungodly muscle spasms, particularly at night. You know how when you fall asleep, sometimes your body does that all-over jerk that feels like you've just fallen from mid-air? Or sometimes it feels like electricity, or like all of your muscles just have to tighten all at once. It's involuntary, and usually harmless, but with my hip fracture, it was unbearably painful.

I also had a huge amount of nausea, which seemed to be made worse by anxiety. Every time the attending doctor and his little doctorlets came by, I felt ill. When my mom wanted to talk about wedding invitations--what kind of print, wording, whether to say "the parents of" or have them be from Brian and me--I felt queasy. When anybody talked about possible discharge from the hospital, I became ill. Where was I going to go? I couldn't imagine going back to the second-story apartment in Westland. But what else could I do? Brian began searching for other apartments, and looking at options also made me feel queasy.

At this point, I began physical therapy. I was on some level glad to be getting out of that torturous hospital device they call a "bed" and beginning the process of becoming something that wasn't an immobile lump of protoplasm, although actually having to do it was painful, difficult, tiring, and also caused nausea. Sitting up for long was difficult at first, but at least I did know--from previous experience--that it would pass and that getting up and moving around would ultimately be good for me. The physical therapist would show up, bring a walker, and have me try to get out of bed and move around. First it was three feet away from the bed and back. Then it was to the door and back. Then it was through the door, across the hall and back. Each time my jaunts got successively longer, and she recommended--as an alternative to going home or going into an "assistive care facility" (read: "nursing home")--that I be admitted to the intensive rehabilitation unit on the same floor of the hospital. I would do physical and occupational therapy twice a day.

So I moved to the room where I would spend my Christmas.

On my first day of occupational therapy, I was measured for compression stockings and given a set of adaptive equipment of the kind they gave to Grandma when she had her hip injury several years ago. I too got the sock put-er on-er, the grippy thing, the giant shoe horn, the pants hook. I'm not sure if Grandma also got the leg loop (it looks like one of those "invisible dog" leashes) or not; I found mine to be incredibly helpful for moving my legs onto and off of the bed.

Physical therapy consisted of walking for longer and longer distances using the walker (but putting no weight on the right foot), doing leg exercises on the mat, and occasionally doing arm strengthening using the pulleys or fulcrum weights. They also taught skills like stepping up onto a curb using a walker, sitting down in a car seat from either a wheelchair or a walker, and using a crutch to go up and down stairs.

I had too much anxiety to do the stairs. I was just too worried about my hips crumpling like phyllo pastry, and the therapists didn't press me.

Occupational therapy consisted of getting me dressed and showered in the mornings, and in the afternoon doing a combination of eye-hand coordination activities, some arm strengthening activities, and some arts and crafts. I saw people making these rubber mats with the Michigan M and when offered the tubs of colored rubber tiles, decided I would try to get creative and make an aquatic scene. The therapist was getting visibly impatient with me (she wanted to clear space off the counter) and I couldn't spend as much time planning my picture as I wanted, so I had to do a fairly rudimentary scene with two fish, gravel, some plants, and two different colors of blue to indicate the depth of the water.

Nobody told me it was going to be a doormat. If I'd known, as I told one of the substitute therapists on the Christmas break, I would have planned the picture to be horizontally aligned...as it was, they must have thought I was either mentally deranged or just really careless.

The other therapist turned it sideways the way I had planned it. "Oh hey, that's actually pretty cute!"

Labels: anxiety, Brian, doctorlets, Grandma, hip, hospital, mom, nausea, physical therapy, spasms, stairs, walker, wedding, wheelchair

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The Food Network (I am enjoying the novelty of cable very much) declared this past weekend to be devoted to chocolate and luuuuuuuv. There were specials on cooking with chocolate, making various confections, the history of chocolate, a chocolate sculpture competition, a wedding cake competition, a very odd segment in which some quirky dude blindfolded people and had them taste unusual items dipped in melted chocolate from one of those new chocolate fountains (oddly, people liked the chocolate-covered cheese puff, and the chocolate-covered carrot wasn't that bad...nay on the chocolate-dipped cheddar cheese, however), most of which I saw multiple times. I've clearly been watching too much of this channel as events will prove, and actually found myself announcing to Brian exactly why I was following particular steps in my cooking this evening.

"Now I'm coating each granule with butter before adding the stock..."

Yes, I cooked for the first time in many months tonight. I intended to do it all myself, but became completely exhausted and had help for the final stages, but am happy and proud to have been able to do something nice for Brian, who's been working very hard to keep me well-fed, despite the challenges (more on that later).

I don't have very many dishes in my repertoire, but one I particularly like involves couscous with toasted pine nuts and chicken with a savory tomato-vegetable sauce adapted from a recipe for something called "chicken provençal" in my cookbook. I tend to use more garlic than required and have nixed the anchovies and olives. It contains onion, garlic, zucchini, eggplant, diced tomato, chicken broth, extra tomato paste or sauce, all simmered together. The chicken is dredged in salted & peppered flour then pan-seared and finally finished up in the vegetable mix. The couscous is cooked with chicken broth instead of water to which a pinch of cinnamon and coriander have been added. The secret ingredient seems to be the pinch of cayenne pepper in the vegetables. The whole thing is very savory and spicy.

We went shopping for ingredients yesterday at Meijer, where I tooled around in one of those motorized scooters. I managed not to run anybody over and was getting really good at making three-point 180 turns. At the store I went a little nuts and started tossing swanky cheeses into my basket. Strawberries. A giant bag of chocolate chips. A French baguette. Crackers.

When the gentleman arrived home from work, there was a platter of various cheeses and fruits, including camembert (a less bitter cousin of Brie and one of my favorites), double gloucester, and some kind of white cheese that had cranberries in it. I also had grapes and strawberries on the tray, some pistachios, and a wine glass filled with apple slices. I also made up a few appetizers consisting of a bread round, slice of camembert, apple slice, drizzled with balsamic vinegar. I regret not having taken a picture of the cheese tray, but we did have presence of mind to photograph the dessert, which was chocolate covered strawberries, which I made this morning.

They were served on a chocolate heart-shaped plate which I sculpted from the leftover melted chocolate and put in the freezer on a telephone book to keep its shape.

The Food Network is creating a monster.

The double-boiler which melted the chocolate, the appetizer plates, the wine glasses, and the beautiful flower centerpiece were gifts from my wedding shower, which took place this past Sunday, thrown by my friends Robyn and Lori. Robyn, as I have often said to people, is a devotée of Martha Stewart. Robyn has impeccable taste and is very good at hosting events and putting together all manner of party things. Foods. Centerpieces. It's really quite amazing.

So the two of them threw of lovely luncheon at The Dearborn Inn, to which a small group of friends and coworkers was invited. There were incredibly delicious sandwiches, there was cake (I have been breakfasting on cake leftovers), there were gifts which will necessitate thank-you notes before I forget who gave me what. I've been having a stupidly great time picking registry things; I tried to be practical, but then was talked into asking for bone china, stemware, flatware, and serving pieces by Robyn, who kept insisting, "Are you sure you don't want to sign up for some Waterford crystal or some Lenox china?" My favorite gift was the 3-tier serving tray which I envision using for high tea. I will need to be sure to invite Robyn and Lori for cucumber sandwiches some day soon. Brian was invited to the shower, which he attended with great aplomb, despite his personal preference to be doing almost anything else.

Saturday was equally devoted to girly things as I desperately wanted to go get my hair done at the Mall. I had decided I wanted drastic highlights, which made the whole affair take longer. Then I needed to consult with the stylist about what to do with hair for the wedding since I won't be able to have somebody do it for me. She suggested hot rollers. I have since acquired hot rollers and a wet/dry straightener. (I've also been watching too many makeover shows courtesy of cable as well.)

I am unappologetic about doing frivolous things for myself; this is the first week in a long time I have actually not spent any time vomiting. I am no longer taking MS Contin, which made me unbearably ill. The constant nausea has made keeping me fed and hydrated very difficult. Brian had been trying to tempt me by listing multiple food options in the hopes of finding something that did not repulse me, but having foods listed to me seemed to bring on the nausea. I have tried multiple medications including Zofran, Tigan, and now Anzimet (which, to those without insurance, costs $9,000 for a month's supply). I had been vomiting at least once per week; the last time was at Sears shortly after my last bridal gown fitting. What if the food at the reception bothers me and I yak all over my wedding dress?

Now I feel like that won't be a problem; I'm so relieved.

I am finding other things easier, and yet have new aches and pains which always frighten me. Walking is getting easier; I am beginning to wonder if it might be possible to use the walker only as a backup for going down the aisle. Maybe my dad will be able to bolster me enough without it...I don't know and might be too frightened of falling to try. My hands suddenly hurt more than they ever have before and opening jars is uncomfortable and my fingers are noticably stiff. Is it the arthritis-like ailment of which takers of Arimidex complain? Is it lesions on the bones in my hands? Is this pain in my side a result of stretching funny or are the bones cracked here like they are in my pelvis? Will I ever know how damaged my skeleton is, and are there things I should be doing (or things I should be avoiding) to keep it from collapsing like a crushed can?

I have an appointment with Dr. Hayes next week. Should I wait, or should I ask about my symptoms before then? I never know. Honestly, I'm hesitant to bring it up with Lita, because she will schedule me for more medical tests and appointments right away.

In the meantime, I will watch more cable to take my mind off things, eat some leftover cake, and admire how even something as pedestrian as Crystal Light can taste really good when taken in wafer-thin glass stemware.

Labels: Brian, chocolate, cooking, Dr. Hayes, hair, hip, Lita, Lori, nausea, Robyn, shower curtain, walker, wedding

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The attending physician on floor 6A was usually preceeded by one of his interns, who would come to ask questions, take vitals, poke and prod, and ask me to breathe so he could listen with a stethescope. Then the full-fledged doctor would show up, with a group of two or more of his interns (I called them "doctorlets"), and repeat the process, which never elicited any new or exciting information. The typical questions were always: "How's your pain?" and "Any shortness of breath?" or "How are your bowels?" or "Much of an appetite?"

They would provide medication based on my answers, which gradually resulted in my taking, in addition to the patch I already had, an increased dosage on the patch, pills for pain (a narcotic and ibuprofen), pills for muscle spasms, muscle relaxing pills, pills for promoting bowel movements, pills for softening stools, pills for stomach health, pills for sleeping, pills for depressions, pills for anxiety, a powder mixed with liquid for--well, they were never able to really clarify what the Nutri-phos is for (I think it might be something like pedialyte)--either an injection of a very powerful opiate or liquid morphine taken orally when I was to be moved, and an incredibly painful shot for preventing blood clots that felt like a bee sting and which I decided might have consisted of concentrated bee venom. After having been immobile for several weeks and on various narcotic products, my digestive system was seriously backed up, which was leading to the abdominal pain and spleen/gallbladder symptoms. So they decided to step up the cleansing of the alimentary canal and also prescribed things intended to flush the colon from every conceivable direction. Yes. You know what I'm talking about. Mercifully by this time I had a private room.

Naturally, I came to dread visits by the attending and his little doctorlets. They were torturing me. Every time they came to visit, I found myself getting nauseous and vomit-y. When my dad and Susan came into town, they took over talking to the doctors when they could (the timing of their visits meant that sometimes they'd miss him and his posse on rounds), and would even leave the room to talk about topics that seemed to turn me green.

I was not in a good way.

When I got moved to my private room, I might have looked forward to getting more individual attention and care from the nursing staff. I now know that this does not necessarily happen.

One of the things the doctors told me is that I needed to drink as much as I could. Take in fluids at all times. Any fluids. Juice, water, milk, anything. I didn't seem to be getting any water, although they did have me on an iv. Also, food is important to get the bowels moving. I needed to keep my digestion working, but I didn't seem to be getting any food, either.

I was actually getting kind of hungry, which at that point meant that I was starving, since my appetite had generally been quite poor, but my breakfast never arrived. I assumed this had something to do with having been moved. Maybe my breakfast got delivered to the other room? By lunchtime I figured things would be straightened out, but again was kept waiting. They had been quite prompt with the food delivery; are they just slower on this hallway, or something? The doctors came, asking about my appetite, and they went. I complained I hadn't gotten any food, and they said they'd make sure the order was there to get anything I wanted.

A few hours later I was ready to chew my arm off.

I called the nurse.

"Um, am I supposed to get a lunch? I've been waiting and I'm really hungry."

"Oh, your orders say no food or water due to a test."

"What test?" I had been told no food or water for the untrasound, but that had been done at six o'clock the previous day.

She flipped through the chart, and found it. "Ultrasound," she said. "You need to not have food or water before the test."

When I pointed out that the test had already occurred--"Or is this another one?" I asked sarcastically--she looked a little bit disconcerted and went to go check.

A little bit later, somebody from food service showed up with a tray. Hospital food is not exciting, nor is it particularly appetizing, but I felt myself beginning to drool. Food, glorious food!

I beheld my tray. It consisted of clear broth, apple juice, and a plate of air.

I laughed hysterically. Clear liquid diet! This is just great...so I hit the nurse call light again and told the person who answered that my plate of air really wasn't the lunch I had been hoping for. "Have you been eating?" They wanted to know. "Usually when you're not eating they start you on clear liquids then..."

Yes, yes. I know all that. But I wasn't on a restricted diet. It was only for that one test, could I please have something normal, instead of something imaginary? He went to go ask the nurse if it was ok. I think she was embarrassed, because they agreed to get anything I wanted. My toasted bagel with cream cheese and container of chocolate milk were delicious.

This was not the only time different shifts of the nursing staff had some confusion about changes in my orders; I learned that as a patient, I was going to have to keep on top of things and let them know. My dad and Susan also helped keep a running list of questions to ask the doctors, which helped immensely. It's also good to know that you can question anything, and you do have the right to refuse the bee-sting shots if you just can't stand them any more, or the plate of air if you want something tastier.

To be continued...

Labels: anxiety, Dad, doctorlets, food, hospital, morphine, nausea, spasms, Susan G. Komen

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So much has happened in the time since my last post. I regret not having been able to chronicle things as they occurred. At this point I think most of the three or so people who read this blog are up to date, but I will try to reconstruct events (to the best of my ability) after the fact.

After my less-than-delightful news about the cause of my joint pain (which just had to be delivered by the incredibly condescending doctor whom I have since given several bad ratings in a mail survey sent to me by Oakwood Westland Family Practice), I intended to soldier on and go about my business. I contacted the University of Michigan Cancer Center, and was told that I would have to supply them with all of the conceivable medical records relating to my initial cancer diagnosis. Slides, mammograms, X-rays, scans, pathology reports, everything.

I was unable to do much of anything besides make phone calls; Brian did most of the collecting. He went to various hospitals and gathered piles of films and scans and CDs. He tried looking at them too, but to a lay person they don't make much sense. The Cancer Center called and said I had an appointment with Dr. Daniel Hayes on November 29. I met the doctor and Lita, his nurse practitioner who both seemed very kind and yet somewhat disquieting. Nobody asked the really dangerous questions, and nobody seemed inclined to provide answers to what remained unasked: how bad is it? How long do I have? What's the prognosis? Will I get better?

What they did do is start setting up appointments like gangbusters. I was to come back the next day to meet with the orthopedic surgeon to find out if surgery would be required for my hip. I was to have the first of my monthly infusions of a bone-strengthening drug and the first injection of the pellet which has by now completely shut down my ovaries (there will not be the pitter-patter of little feet in my future unless the little feet are attached to a puppy), and I was to meet with the radiation oncologist to get "measured" for the radiation treatments.

The next day I was back at the medical center being wheeled around. Good news from the surgeon: no surgery. It wouldn't really help at this point, and radiation would be of more benefit. The infusion was unpleasant, as they always are; the iv lady couldn't get the iv started and after several failed attempts had to get somebody else to do it. The giant needle used to insert the pellet hurt like a m***** f*****. When they say "You might feel a little sting," be prepared for the PAIN.

Finally I went to meet the radiation oncologist, who was oddly smiley, and the radiation people put me on the table, made some marks on my body, and then said something which sounded disturbingly like, "Ok, now we're going to do the tattoos."

"Is that really necessary?" I said. I'd had it with being stabbed for one day.

It wasn't. They were able to make do with stickers, so I avoided acquiring permanent markings as a sign of my treatment. (I did eventually get something of a radiation burn on some very private areas--and suffered some rather interesting hair loss--but the rash went away and I assume the hair will eventually grow back. If not, I'll forever be able to save money on the kind of bikini wax job people pay good money for.)

Sitting up from the table, I started to feel very ill...I am extremely familiar with nausea and started having that extreme saliva production that heralds the onset of, well, the puking. Somebody grabbed a pink tray for me, and I spewed into that for a moment. Of course the involuntary spasms caused no small amount of agony in my hip.

Later that evening, getting into the car, I had trouble turning on my good foot and accidentally put my full weight on the injured side.

Agony.

Every bump in the road compounded it.

Getting out of the car took forever.

Getting up the steps was one of the hardest and most painful things I've ever done; putting any weight at all on my right leg caused horrible, excruciating pain. Dangling the leg and putting no weight on it caused similar, but different pain. Every time I was able to hoist myself onto the next step, my right foot would tap the step as well, causing more agony. About halfway up the staircase I started to feel like my left hip was snapping apart as well. I don't know how I finally made it; Brian tried to help but lifting under my arms didn't work either. I eventually made it onto the landing and it took about a half an hour to go from the front door to the bathroom. From there I went to bed, where I planned to stay the next day.

Before leaving for work the next morning, Brian made sure I would have pills and water nearby, and that I'd have access to a phone. When I woke up and attempted to get out of bed, I was made painfully aware that I was not going to be able to do so. I couldn't get out of bed, much less cross the hall to go to the bathroom or make it down the stairs to any of my radiation appointments. I called Brian and left a message; Brian called Lita and started planning how to get me admitted to UM Hospital's Emergency Room.

To be continued...

Labels: blog, Brian, Dr. Hayes, hip, infusion, IV, Lita, nausea, Oakwood, radiation, spasms, University of Michigan Cancer Center, Zometa

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