Saturday, November 08, 2008

New Record

My last tap (on election day) managed to suck out 3.6 liters of fluid from my belly, a personal record. I have been scheduled for weekly taps so I have the option of canceling if I feel like I don't need one.

I had the head of the unit performing the procedure again. I can't say it was pleasant, but at least the only part that hurt was the administration of the numbing agent.

I have decided for now not to go with a permanent drain. The prospect of never being able to have a bath or go into a pool or hot tub (or the ocean) again isn't something I want to take on right now, particularly since Brian and I are planning to take a trip to Traverse City during the holidays, and our hotel room will have a jacuzzi.

In other news, I am waiting for an MRI that is to take place Tuesday evening at 10:40. I am not particularly troubled by small spaces and actually tend to fall asleep inside the torpedo tube. The purpose of the MRI is to determine why I have pain in my left hip--whether the femur or pelvis is fractured or what. The ex-ray was inconclusive. So I am walking with a cane for right now to keep weight off of my leg and am taking some slightly more hefty pain medications than just ibuprofen.

It wasn't just the pain meds that made me imagine Barack Obama won the election, right? It really did happen? Woohoo!

I have said for a while now that I would love to see a woman or a black candidate become president of the United States. I am pleased that not only do we have a historic situation as a black man is now president-elect, but he is well-reasoned, inspires hope, and has fired the imagination of Americans like no one in politics has in a long time. My hope is that he will be able to use the good will and capital he seems to have among other nations to help make the world a more peaceful place.

I am less sanguine about this country's economic situation and think it will take more years than he will have as president to recover from whatever this is--recession? self-adustment? depression? aberration? consequences of irresponsible de-regulation? But I can hope.

Yes, I've got an abundance of hope. And enough stubbornness to think that I may get to see the recovery for myself.

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Tuesday, July 01, 2008

Brain Update

The BrainI'm not bent on world conquest to the degree that the Brain is, but I have the same pale noggin and bags under my eyes. I think that's as far as the comparison can really go (unless somebody wants to make a crack about my shortness of stature). Brain may have been experimented on and possibly gets lots of shots, but I'm pretty sure they don't have to give him little tiny mouse MRIs.

I got good news about my recent brain MRI: The scan shows no new lesions, and the existing ones are reduced in size. Brain mets do not automatically go away; once they're killed, they either can sit there, inert, for quite a while, or sometimes they get reabsorbed by the body and disposed of.

At my appointment today it was decided to delay my next paracentesis until Monday so as to not do it too early--Brian and I are leaving for New York to visit his brother Scott and the various nieces and nephews for the Fourth of July. I also found out my liver function numbers are improved, and that I would be getting infused today. I had to walk over to "Med Inn" which is actually a hotel in the hospital for out of town patients and family which has treatment areas that are semi-private and they had a strolling massage-giver offering foot or back or neck rubs or whatever. They don't do that at regular infusion! And regular infusion is always out of bagels.

Pinky and the BrainSince the swelling in my brain is down and my cognitive function seems pretty much normal, I can set aside my fears I was going to end up incoherent and illogical as Brain's cohort, Pinky. I hope no more pesky lesions crop up.

"Pinky, are you pondering what I'm pondering?"

"I think so, Brain, but where are we going to find men's underpants that fit?"

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Tuesday, June 17, 2008

Xeloda a Bust: now we try Gemzar

My appointments today ran rather longer than expected. The nutritionist gave me lots of sample protein supplement drinks and mixes, gave me a folder filled with nutrition information, suggested small, multiple meals per day (I think I'm going to have to make myself a schedule) and told me exactly how many calories and how much protein I should be getting to not lose any more weight.

It's a lot more than I expected.

She also gave me advice about dealing with the horrible taste in my mouth. Lemon things seem to be pretty good.

Of course, with the change in chemos, I might not have the same appetite problems, although I do see "loss of appetite" on the list of Gemzar side-effects. I shall try not to psych myself into having the side-effects that are listed. Brian is at the grocery store and asked me about whether I'd want ingredients to make one of the smoothies. I do not want smoothies...I wish I did; it would be fairly easy to put them together. Oh well.

I got very nervous when Dr. Hayes mentioned that 5% of people taking Gemzar develop pneumonia. How lucky am I feeling now?

Also, tomorrow I am to have an ultrasound, and if there is a pocket of liquid in my belly, they'll stick a big ol' giant needle into me, push in a plastic "straw" and let the fluid drain out like I'm a maple tree. Later this month I'm having a brain MRI to get a new "baseline" and check up on how my noggin is doing.

Busy month!

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Tuesday, March 25, 2008

Yay! Hospital Food!

I went to the clinic on Friday and got to speak with the nurse practitioner who is Lita's counterpart. I believe she tried to give me good information and assistance, but I don't think I will consent to speak with her again unless Lita has been hit by that mythical bus that's just aiming to kill everyone. I felt things were going fine until she asked me if I had ever had a conversation about ceasing treatment.

Huh? Why the would I be calling asking about my symptoms and trying like heck to get back on chemo if that were the case? Why would THIS be the time to be having such a discussion? I was very upset and later, extremely angry that she would say such a thing to me. She doesn't KNOW me. Perhaps she was attempting in some clumsy way to bring up the notion of advance directives, but I've already gone through that with other people and it's not her business. I don't know to whom I can complain about this, or maybe I should just let it go.

Anyway, after an early morning MRI on Saturday, I got a call from one of the doctors I saw initially about the brain mets that I should go back to the hospital immediately. I was able to go to the floor instead of being admitted to the ER, which streamlined things somewhat, but it did mean having to be in the hospital over night for who knows how long. The plan was to radiate my thoracic spine--the MRI showed that one of the two lesions on my spine had increased in size, and the one in the T9 area is poking into my spinal column, which may account for some of my recent symptoms (but not the shingles). This is seen as an immediate problem, since delaying action can result in, oh, say, paralysis.

Sigh.

I got a private room, which was kind of nice. I also had multiple radiation/neuro people come to my room to have me squeeze their hands, follow the light with my eyes, and have invasive procedures to test the muscle tone of an area one doesn't want to have evaluated multiple times unless one has that particular fetish.

I refused the third "evaluation."

Sleeping was also a problem as they have seen fit to up my decadron to 8mg a day. I finally saw the movie Brigadoon (I have a soft spot for Gene Kelly) and a number of shows on Animal Planet about some amazing dogs that have vastly improved the lives of their owners, including one lab puppy who kept running away from home to be with a lady who eventually had her breast cancer diagnosed after the dog became upset and was poking at her breast incessantly. Dogs have been trained to detect cancer cells by smell, but this dog just did it naturally.

I did get released on Easter; I was expecting to go to my mom's for dinner, but that just wasn't going to work out. Instead, after she arrived at the hospital only to find out that I had just been discharged, we all went back to Canton and Brian's parents showed up shortly afterwards.

I've had three radiation treatments so far; they've scheduled them all at 7am, which is hilarious. This time I don't have to wear a mask; they just have me up on the table. I will have ten treatments altogether, and it will be over April 2. I don't know how long I will have to recover from the radiation before they can resume the chemo. I really hope there are no more hurdles. My other things have to heal and we are all hoping I don't get some kind of inconvenient infection.

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Wednesday, February 06, 2008

You Are Not Morg or I-Morg

Sunday I was afflicted with aphasia.

I had posted to a bulletin board and was flipping back and forth with Brian between Alias, Puppy Bowl IV, and the Superbowl. I was also trying to begin knitting a hat, and started having trouble counting my cast-on stitches.

I suddenly felt very stupid. In addition to actually having problems counting, I couldn't remember how to finish casting on. Then I couldn't figure out how to start knitting the round.

Then I got tired of watching Alias, so I tried to tell Brian that he could watch the Superbowl, since we had already seen most of a showing of Puppy Bowl.

The words wouldn't come out.

I got frustrated, Brian got frustrated with me, so I went upstairs to take a bath. When Brian tried to ask me what was wrong, I really couldn't explain or do anything much more than cry. I could pretty much only say "yes," "no," and "oh Lord." So he dialed the on-call oncologist's number, and we were told to go to the emergency room at U of M, where they tried to ask me dizzying questions I couldn't answer, and gave me various scans, which indicated positive for brain metastases.

I was admitted and have so far been through three whole-brain radiation treatments. I will undergo fourteen altogether.

What really helped me recover speech and thinking (I couldn't remember properly the days of the week or months of the year--I couldn't remember our dog's name; I couldn't spell "Elkins" or "Yanosko") was a tiny steroid pill. I have been evaluated by a speech therapist, who believes I am doing just fine. The brain radiation might cause some temporary loss of memory or cognition, but it may be possible to increase the steroid. I have also heard a lot of positive stories about people being successfully treated for brain mets so I am very hopeful.

It was terribly frightening, but we will deal with this.

For now I feel like I've had the brain helmet put on and could operate on Spock if I needed to.

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Wednesday, October 10, 2007

Not Morg or Imorg

Today I feel like my own brain has been swiped.

I needed to have an MRI of my lower spine. In light of one of my complaints to Lita, she consulted with Dr. Hayes and wondered if there might be irritation of the nerve bundles in my lower spine, which has quite a bit of metastatic damage. Apparently, "irritated nerve bundles" can cause wacky symptoms that don't seem to have anything to do with the back. So U of M scheduled me for an MRI on October 10.

At 2:40 a.m.

That is not a typo.

Brian and I slogged out of bed and to the car at 1:45ish, and we got there slightly before 2:30. We weren't sure if we were supposed to park in the structure or use the ER parking valet, or what. We parked in what is the most poorly arranged parking structure ever, and then walked the loooong walk to the east elevators.

Having an MRI involves contrast dye, which the technician said was water soluble. I asked if they could inject it through a port, since it wasn't iodine contrast. "Yes," she said, "Is your port accessed? I don't have a nurse here at night so we can't access ports."

Great. So because of the asinine scheduling, I had to endure being stabbed three times, once in the crook of the arm (vein was too deep) and twice in the leathery scar-laden veins on my hand. People always think my hand veins are going to be good. They are mistaken.

We got home at five. I got up at eight to come to work. I am cranky and disoriented; a bad combination. I have bags.

Grrr.

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Sunday, June 17, 2007

Don't Even TRY to Tell Me

Warning: this is a long, rambling rant. It does not contain sufficient citations/annotations and is somewhat repetitive.

"People who get DCIS are lucky."

Read my archive and then tell me how "lucky" people who get DCIS are. I heard this from my doctors, and I've read it on cancer survivor bulletin boards. People assume DCIS involves less treatment than other types of breast cancer so it must be "easier." I know of people who had their cancer staged higher than mine who had less initial treatment, and probably will not recur--some of whom express envy of people who were staged with DCIS.

One of my bulletin board compatriots, a woman who has metastatic disease, also had DCIS and now has confirmed brain mets.

The tiniest cancer cell is as deadly as any other mass of cancer cells.

"CMF chemo is 'light' and therefore easy."

I felt like I had the flu for six months and gained permanent aversions to certain smells. I can never smell baby shampoo without gagging because my oncology nurse suggested that baby shampoo would help keep my hair from falling out.

Just because I only developed a bald spot and didn't lose all my hair did NOT mean I felt swell and dandy. Having the flu sucks. Having flu symptoms as part of an effort to make you "better" doesn't make the symptoms more fun.

"If you don't have a 'family history' of breast cancer, your risk is lower."

Most people who are diagnosed with breast cancer have no family history. Having a family history can raise an individual's risk--and may be an indicator that there is a genetic component--but that's a completely different kind of statistic and doesn't apply to the population as a whole. Yes, screening of people with a family history is extremely important, but so is screening the majority of the population who will be diagnosed. I've been told many times it's better to catch it "early" (see my remarks about DCIS above), so why are doctors not more interested in catching it early?

"It's not worth screening younger women because of all the 'false positives.' "

I was diagnosed at age 30 and had no "history" of breast cancer that I knew of. My mother, my grandmother never had it; I have no sisters. If I had waited until the appropriate age to have a screening mammogram--and if my family care practice hadn't been on the ball enough to suggest a mammogram to investigate my lump (which, freakishly, turned out to be harmless, although there was cancer there), I'd still be waiting for my screening mammogram.

When I was first diagnosed, I was advised to get a copy of Dr. Susan Love's Breast Book. It is very large and makes an excellent doorstop. She explains the anatomy of the breast as well as anyone can, but this book did not help me because I had doctors who were able to explain things as least as clearly and in fewer words. While I was going through treatment, I encountered an article she wrote (or was interviewed for...I'm too angry and lazy to go look up the citation) in Glamour Magazine wherein she commented that we make too big a deal out of cancer and that many young women are unnecessarily frightened and undergo unnecessary surgery due to a rash breast cancer diagnosis.

Her entire thesis is that those people who might experience a "false positive" are statistically more important than I am.

Well f*ck that.

Recently guidelines for breast MRIs were published that I had hoped would make it easier for younger women to be screened for breast cancer (the difficulty being that young breast tissue tends to be dense and mammograms don't work very well on dense breasts), but the guidelines still state that MRIs are really only appropriate for people with "an increased risk" of breast cancer.

Do you know who is NOT at "increased risk"? PEOPLE WHO HAVE ALREADY HAD BREAST CANCER.

?!

People who are under the age of 35 who have "no family history" but who have an unexplained lump are not at "increased risk." This whole MRI thing would have had me still waiting for my baseline screening.

I don't read Dr. Susan Love's remarks anymore, and I get very angry when I read things of the same flavor...Anyone who suggests to me that statistics are a valid reason to let me go untreated/undiagnosed is not somebody I care to listen to.

"In follow up care, we shouldn't be too quick to run scans and tests."

This is largely to keep costs down, I believe. Scans and scanning equipment are expensive. "False positives" are expensive. Insurance is expensive. It is not good to cause needless emotional trauma to fragile, fragile women.

You know what else is expensive and traumatizing? Spending a damn month in the hospital with a mangled pelvis because it wasn't worth running expensive scans on a "lucky" woman who had DCIS, did "light chemo" was "cured" and has no "family history." I would be very interested to know if anyone has ever calculated the relative cost of treating someone who was not screened early enough to catch a disease before it got really ugly versus the cost of doing a scan that finds what it is looking for so the patient can be treated appropriately. I know my treatments have not been cheap. How much money could have been saved by doing a bone scan months before I had all kinds of other procedures which were unable to verify why I was having hip pain?

"Stage IV people should be treated if they are symptomatic, not before. We shouldn't go looking for disease in remote parts of the body."

I've heard that by the time bone mets are painful, they are very advanced. What's wrong with preventative medicine? Doesn't anybody study whether preventative medicine is cheaper in the long run than treating advanced crises? Wouldn't therapies that prevent bone mets reduce costs for everyone later along the line?

I also have recently read some articles debating the merits of doing routine brain scans on people with stage IV cancer. The current thinking (and I believe my doctor feels this way, too) is that in treating advanced disease, one treats the symptoms and doesn't go looking for trouble. In other words, my doctor probably will not check me for brain mets unless I start having severe neurological symptoms. I did have a brain scan when I was going through my stint of uncontrollable vomiting, but haven't had one since.

I will not have targeted therapy of my liver--and instead will continue systemic treatment--because I feel "fine."

The woman I referred to in the beginning of this post, who was also feeling "fine" until just a day or so ago has just discovered that she has some massive lesions in her brain. She discovered this by undergoing a terrifying seizure, during which she was conscious and could hear her own labored breathing--which she describes as sounding like that of her dying grandmother.

I wonder if I am becoming too complacent with my own treatment.

Maybe it's time to demand some scans. I have to do my part to drive up medical costs for everyone else to save my own, needless ass.

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Wednesday, March 22, 2006

Appointments and CT scans and MRIs, Oh My!

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.

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Monday, February 06, 2006

I Am Not a Ragdoll (or, Use the slide board, for the love of God!)

On floor 6A of the hospital I underwent ten sessions of radiation, any number of tests including X-rays and MRIs, and a liver biopsy, which were all terrible in their own way, but I'm going to spend a little time talking about transportation of people with hip fractures.

I know I've mentioned the unbearable, excruciating pain. They had to prescribe liquid morphine so that I could take something to make being moved bearable. There was also some kind of intravenous thing they were giving me that put me into a twilight state that was blessedly numbing. What they do to move a patient onto the transport table is that they get four to six people to grab the extra sheet under the patient (called the "draw sheet"). Everybody grabs an edge of the sheet and then they try to coordinate efforts and heave on the count of three. I found this method to be invariably awful.

On one of the occasions when I was to be moved, I started to cry and somebody promised that a "slide board," which is a slippery body-length board which the patient and draw sheet can be slid over, would make everything better. When the nurses and assistants and orderlies used the slide board, it worked amazingly well. There was no friction. My legs moved at the same time as my hips which moved at the same time as my upper torso...Unbelievable! The people in radiation were good at moving patients without causing any kind of pain (they're used to dealing with people who might have broken spinal things), but for the nursing staff on 6A to do it was amazing. I begged them to use it every time, but there were one or two people who insisted it didn't work or didn't make things any easier. The last example of this was the "kindly" man who directed my transfer when I had to go get my liver biopsied.

John was leaving to go back to Chattanooga, and I was already very sad about that. I don't see my brother often, and when he made plans to come and visit me in Detroit, I'm sure he didn't intend to spend the time visiting the hospital and packing books in my apartment. He looked at me funny when I said I was sorry his trip wasn't better.

Then, when the person directing my transfer made no moves to use the slideboard, I lost it and began sobbing uncontrollably, which never helps with the pain issue. "Now you have to relax," I was told. "It makes it worse if you don't relax."

What makes it worse, a**h***, is being told to f****** relax when you're about to heave and plop me onto a table, while telling me that if it hurts, it's somehow my fault.

Being moved was awful. I cried long after the pain subsided, though. I sat in the surgical waiting/recovery area and sobbed. Everything was awful. I hurt; John was leaving; I was frightened of the biopsy.

I was even more frightened when I found out that this is not something they knock you out for. It was an ultrasound-guided procedure, and I guess they needed me conscious so that they could tell me to not inhale at a certain point, since they insert the biopsy needle in between a couple of ribs.

That's right. They stab you in the chest while you are conscious, and ask you to please not squirm around as they're digging for the right spot.

"Don't worry," the anesthesiologist told me when I appeared apprehensive. "We'll give you a fentanyl drip and you won't feel much discomfort at all. He was not happy when I told him I was already on a fentanyl patch...I guess either he gave me something completely different or reduced the dosage, and the biopsy hurt like hell.

I will never again submit to such a procedure. They'd best not plan anything involving stabbing and searching unless I am totally unconcious for the procedure, because I will resist to the utmost of my ability, particularly if they try to claim that I "won't feel a thing!"

Liars.

They had to try separating my ribs twice, because the first time they jabbed, the needle bounced off. Then, after more careful poking and prodding with the fingers, they jabbed me in a gap between two ribs and inserted. They told me internal organs don't have nerve endings, so I shouldn't feel pain, but I swear I could feel the resistance as the needle encountered different kinds of tissue. So I experienced pain from the initial stab wound and knew exactly when it encountered the liver. I could feel it, and they had to work the needle around a bit to find the "right" spot indicated by the ultrasound.

After it was over and I was back in my room, the radiation team came to get me, but I refused to go. I'd had it; I didn't want to be moved any more, and I exercised my right as a patient to refuse treatment (they did make up for it later).

The next day, the doctor and his accompanying doctorlets were shocked to find out that the biopsy was very painful and that my chest still hurt where the needle went in. To his credit, the doctor was very concerned that I seemed to have anxiety about being seen by them, and that they weren't really able to do much to help me. I said what would help would be if they could always use the slide board to move me, so he agreed to write it as an order in my chart. Being moved was much better after that; I no longer dreaded being moved, I didn't have to take the liquid morphine as frequently, and I started having some positive feelings about the doctor and his interns.

Also, I stopped feeling shy about being moved with the slideboard. I vigilantly reminded people that it was there, and that they were to use it or I wasn't going wherever they wanted to take me.

To be continued...

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Friday, October 28, 2005

What I plan to be for Halloween

For Halloween I plan to be a photon torpedo. I will be arriving at the hospital at 5:00, will be injected with contrast dye, and will be loaded into the torpedo bay where they do MRI scans.

I had an MRI last Wednesday, and the report showed some possible "activity of the L4 and L5; results inconclusive." They recommended a repeat, this time with contrasting dye.

At least this time I will know to park by the West entrance. Last time I was unaware that they wanted me to sign in at the west lobby, so I walked in the main entrance and had to negotiate several very long hallways. Then they made me walk down several more long hallways to get to Radiology. Then the MRI guy came and got me, and led me down a bunch of other corridors, until we ended up in what looked like a loading dock (complete with a hydraulic lift), and a big industrial door which slides up and down and looked like the back of an 18 wheel semi. I swear to god for a moment I thought I was being abducted.

"They're going to load me onto a truck, take me to Iowa, and perform heinous medical experiments!" Yes, I have probably seen too many episodes of X-Files. (When I related this story to a colleague, I had gotten as far as mentioning the loading dock area, when she blurted out, "You're just like Scully! You're going to end up on a rail car with probes sticking out of you!" I'm not the only one.)

November 3 I will be having my second-ever bone scan. This time the radioactive isotope will cause a mutation granting me super powers; I'm certain of it. I deserve to have super powers. I will try to use them for good and not for evil, although I'm really hoping I gain the ability to electrocute people.

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