Janet's Blog

New Record

2008-11-08T15:55:00.002-05:00

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.

Cover: Blown. Belly: Tapped.

2008-10-23T10:12:00.005-04:00

Not that I am actually very anonymous, or anything...

Dr. Hayes and Lita told me yesterday that another patient had brought in some printouts from my blog mentioning their names. My mind raced...had I said anything unflattering or unsuitable? I didn't think so. I've actually gotten some emails from people seeking contact information for them. Once somebody even Meebo'd me looking for Lita's email address. I'm happy to tell anyone that my oncology team is fantastic. (And I'm not just saying that because I'm worried they're now reading what I have to say!)

I also broke my record yesterday and had 3.02 liters of frothy, green fluid sucked out of my belly. Since I didn't have time to take any Xanax, I was relatively alert and had a nice discussion with the PA and the other technician about the water that's in the vacuum bottles. The question was whether or not the bottles always have water in them. The PA read the bottle, and it indicated that they are always treated with hot steam for sterilization purposes.

I pointed out when the steam cools, not only would it result in water, but it would help create the suction, as well. "I suppose the air would get heated and then also cool off, creating more suction."

They were impressed by my scientific acumen and wanted to know how I knew. I pointed out that you can do an experiment where you put a lit candle in a dish of water, then cover the candle with a glass. The candle will go out when the oxygen is exhausted, the air cools off, and it will suck water up into the glass due to the creation of a vacuum.

"Are you a chemist, or something?" They asked.

"No, I think I saw it on 'Bill Nye the Science Guy'. I'm a librarian."

Everybody laughed. Well, he's scientific. "Yeah," the technician commented. "It totally says so in his name!"

I suppose they might have some other means for creating vacuum in those bottles, since I have no way to calculate or prove how much the cooling action of the steam might create it, but I still maintain it's possible. Surely they wouldn't want the vacuum to be too strong, otherwise the catheter would start to suck out my innards.

Birthday!

2008-10-18T12:22:00.003-04:00

Any year I continue to suck air has to be cause for celebration. Or at least I certainly hope so.

I'm home, albeit with digestive difficulties (probably from the IV antibiotic). I also have swelly feet, legs and belly. But I'm extremely relieved I don't have to spend my birthday at the hospital.

I am 36 today and have been fêted for almost a week (if you don't count the early gift of the Amazon Kindle). My mom brought stuffed peppers and a Sweet Dreams Bakery cake (much like the one pictured) to the hospital last Sunday. Thursday she took Brian and me to Musashi for dinner, yesterday Brian finished hanging curtains for me and gave me the DVDs The Red Violin and Walk the Line. Today he took down the butt-ugly pool hall style light over the dining room table and is putting up my Ikea octopus light, "Hörby". Tonight he is taking me to a Red Wings (hockey) game. I'm not a hockey fan, but I'm excited and kind of hope there will be much violence.

Not that I have rage issues, or anything.

Hospital....Again

2008-10-15T19:20:00.003-04:00

Thursday I began to get the extreme chills which indicated (as back in April) that I probably had a high fever and should go to the emergency room.

I didn't want to go to the emergency room.

So I took ibuprofen, and by the next morning my fever was back down. I had a conference to go to Friday at which I was to participate in two presentations. In my car, waiting for Barbara to show up to carpool people to Lansing, I started having violent chills. I took my temperature and it was 102.4. I heaved myself into Barbara's car and eventually (between bouts of violent tooth-chattering) told people I was feeling cold and had a fever. "If I can't move my hands without jerking them," I told Joel, "you might have to move the mouse." Beth let me wear her knitted wool scarf.

During the opening remarks, Barbara got someone to find me a blanket. By noon my temperature was about 104. I eventually stumbled into the presentation room with Joel, and we gave a presentation on "Google Analytics in the Web Opac" I hope people found interesting. I might have babbled.

The next presentation didn't require me to talk much, so I sat in the front with the blanket.

On the way home, Barbara suggested I sit in the heated passenger seat. Why aren't all car seats heated? Sigh. I was able to drive myself home from the carpool meeting site and called the cancer center. The triage nurse spoke to one of the nurse practitioners (and very wisely did not put that particular person on the phone with me) who said, "Go to the ER."

So I ended up at the ER with an initial diagnosis (after chest ex-ray) of a small touch of pneumonia.

Thursday my mom brought birthday cake, stuffed peppers for dinner, and presents! Presents! Ah loves me some presents. I got a glass murano-style giraffe from the zoo, a handmade cashmere hat and sweater, a penguin trivot, and some other things.

But testing resumed, and a blood culture showed rampaging E coli. Lucky me, either way! I stayed in the hospital long enough to get another paracentesis (they wanted to check to be sure whether the infection is in my belly fluid or not). My belly got so incredibly bloated it was causing my ribcage to expand painfully.

Once the tap was done and they decided what antibiotic I needed, the discharge people planned to let me go with a styrofoam cooler full of antibiotics I can administer to myself. They will be sending a visiting nurse to make sure I have all the steps right. (This is good as I am not at all sure I have the steps right).

Freedom! Sort of...

Giraffe Encounter!

2008-09-30T20:40:00.003-04:00

Saturday Brian, my mom and I went to the Detroit Zoo to feed the giraffes. Brian and I got there very early and lined up--we were worried when the large group of kids wearing matching shirts went in because there is a daily limit to the amount of tickets available for the Giraffe Encounter. Obviously, we were successful.

It was a lot of walking even though we took the train to the back of the zoo. I was ok later, but Brian had very sore feet!

Detroit Zoo Photos

Get Shirts for "Breast Cancer Awareness" Month

2008-09-29T17:44:00.004-04:00

Janet's Blog store is open for business. I currently have shirts in honor of my favorite month of the year: October. I love October because it's my birthday month, and not because it's a pink-washed span of time for people to give lip service to the fight against breast cancer. I'm already quite "aware" and don't need pink ribbons to remind me how terrible this disease is. So I offer an alternative sentiment:

http://www.cafepress.com/jellykins

I personally think any of this stuff would make a delightful gift for loved ones, although perhaps it's not entirely child-friendly. Your teen would think you're a total bad-ass if you got him or her something with the F-word on it.

Addendum

I'd like to add that whereas the prices seem high, I do not plan on making vast sums of money on the items for sale. Cafepress is kinda pricey and there is very little markup on my merchandise. I'll earn a penny if you buy a "Boobeyes Clock."

If It's Tuesday, I Must Be Bulgin'

2008-09-25T00:41:00.002-04:00

I put off having a paracentesis until this week because it didn't seem so bad last week. By last Thursday I was feeling pretty uncomfortable. So I arranged it for Tuesday, which at least had me on the same day as infusion (only one day at the hospital) but I wish I had goon sooner!

Man, do I feel better.

At my regular appointment, I found out that my tumor markers are nearly half what they were (Yay, Gemzar). No word yet on the ctc test, which has to be sent out for analysis. The last number I saw (in August) was alarming in light of the "key" below on the sheet, which indicated when ctc is used for prognostic purposes, any number higher than 5 indicates overall survival of 4.1 months. My number was 19. I have exceeded the "prognosis" by three years, so I'm not sure I can treat that number as anything more than a snapshot from a trend like the other numbers.

Months. Bah.

It wasn't enough to dampen my thrill at the other markers AND my liver counts, which are approaching normal. Maybe soon the ascites build up will slow down and I won't have to be poked and drained anymore--or at least not as frequently.

w00t!

"2 young"

2008-09-15T09:40:00.003-04:00

Those of you who use RSS feeds to follow my blog, please click out to the actual blog.

First, you will see happy new Fall graphics.

Next, I'd like to ask you to scroll down a bit and peruse the "2 young" menu on the right side of the page. These are some of the women I've encountered on the Young Survival Coalition bulletin boards. It is by no means a comprehensive list of all the women there who have their own blogs, web pages, MySpace pages, Caring Bridge pages, Facebook pages, etc. But I quail at adding more names because it's a pretty long list, even here.

Two of the pages in the list now belong to women who have died from their breast cancer. "Jayme" would have been 36 at the end of this past July, but she didn't make it to her birthday. "Courtney - bccourtney" died last night at the age of 23. She was a dancer; she was diagnosed three years ago and the disease ate her body away.

I don't really know what to do with the links, because they won't be updated. Do I just whittle the list down, or do I leave the names, knowing that nothing new will be posted; no answers will be listed on their personal pages about where they are and what they are doing?

Sorry for the downer. It's just vitally important for people to know that young women do get breast cancer, and that young women also die from it. "Early detection" and "prevention" are worthy concepts, but insufficient. Is "Cure" too much to hope for? I hope for myself and for the women listed in the right margin--and for all women dealing with breast cancer who aren't in my feeble list--that it isn't.

I guess if you are bummed now, try looking at the happy Fall graphics again.

Love,
Janet

The News--It is Good!

2008-09-13T18:48:00.002-04:00

So I went to see Dr. Bierman the orthopedic specialist (she's the who saw me three years ago when I had broken the right side of my pelvis) about the pain in my left hip and femur.

She has looked at the ex-rays. Her assistant came in and prodded me to determine where the areas of pain are, wiggled my leg around, and then went to get her. She came in and poked where the assistant said I was having my pain, and based on what they found, they both agreed my horrible affliction was probably.........

....bursitis!

There appeared to be no structural reason why I can't put full weight on my hip and I was able to jettison the cane for now. I'm very excited about this.

Granted, I've had false diagnoses before, but this time it's a specialist in the cancer center assessing my hip. They were able to do a procedure in the office where first they numbed my hip with lidocaine and something else (which was actually the worst part) and then they injected a bunch of fluid that included a corticosteroid to help reduce inflammation. They rubbed the hip to spread the fluid around, and had me walk for about ten minutes. I also got a prescription to visit a physical therapist to get information on exercises I can do to make the bursitis go away so I hopefully won't need more shots.

I feel so much better. Granted, if the pain returns they can still do scans, but I'm happy with having the orthopedic person tell me I'm not in danger of breaking my femur or hip. Woohoo!

The Hip Bone's Connected to the...Thigh Bone (isn't it?)

2008-09-10T02:01:00.003-04:00

And so I've been having some hip pain for the last few days, which seemed to feel worse as I either twisted while putting weight on my left leg, or tried to roll over in bed.

Normally I would chalk it up to random soreness (like the pain in my shoulder I think comes from sleeping on my arm in a wonky manner), but I refuse to blow off pain in my hips, especially after the ordeal in 2005 which left me with pelvis crumbs, requiring a month-long stay in the hospital after seven months of useless and ineffective treatment, and required a move to an apartment without lots of stairs.

I was going to call my nurse practitioner about it in a few days if the pain hadn't gone away, but at infusion today the chemo nurse asked if I was having any pain. So I admitted that I was, that it wasn't bad, but I was wondering if I should get an ex-ray or something. So I spoke to the PA, who set me up with ex-rays right away. They got a wheelchair for me--it was very wide; I felt compelled to make beeping noises as we rolled down the hallway--because they didn't want my hip to blow out as I was on my way for a diagnostic test.

The results did show some "activity." Unlike the last time, the part that's becoming a little spongy is the spot connecting the main part of my left femur with the ball joint that fits into the socket of the pelvis. I think there's also some damage on the top ridge of my pelvis. The PA told me I'd need more precise scans--which I am hoping do NOT include a CT with contrast dye because IVs are eeeeeeeeeeevil--and I'll be set up with an appointment to see the orthopedic surgeon. I saw her once before when I began treatment at U of M. There was noting to be done about my pelvis then, but there might be something to be done to "shore up" my femur.

I've got a cane now because I really don't want to tote a dorky old-person walker with me wherever I go. I need one of the hot-rod walkers that have the hand-brakes and built-in seat.

Vacation is GOOD For You (and some slight marketing for Amazon)

2008-09-05T10:10:00.005-04:00

Greetings. After not having posted for a while, I have a number of things to discuss. So pull up a chair, grab a beverage of your choice, and let's get going, shall we?

Vacations with Brian - This photo album includes pictures of our trip to New York to see Brian's brother and nieces and nephews. I wish we could have seen more of Scott and Charles, but it was great to spend time with the kids. We tried to go see Wall-E one day, but Charlotte was scared of the explosions, and there was a fire alarm at the movie theater. Instead we we all got together for lunch and then went to the non-fire-alarm end of the mall where there was a carousel. I was satisfied after one ride, but the kids wanted to go again, this time on one of the spinning cars that are like the teacups at Disney World. Olivia is pretty strong, and spun that thing like nobody's business. When they got off, they were staggering like little drunk people. All of the children seem inordinately fond of butter. This is what happens when you eat a mostly healthy diet. That which is usually forbidden becomes irresistibly alluring.

Later in the summer, Brian's parents took us to a minor league baseball game in Midland, Michigan. We got to sit in one of the luxury boxes and were treated to hot dogs, brownies, popcorn, and drinks. It was great fun, although the Great Lakes Loooooooons were defeated by the Iowa Kernels. (Brian and I went to a Tigers game, too, but forgot to bring the camera.)

My mom also generously took us to Stratford's annual Shakespeare Festival, at which they show more than just Shakespeare. We saw Hamlet, The Music Man, and a double-bill of Krapp's Last Tape and...I've forgotten the name of the O'Neill play--oh right: Hughie. We played pool (with a lower-case "p" that rhymes with "T" which stands for...Trouble!), ate swanky foods, and shopped (which I am sure Brian and John don't enjoy all that much).

Also included are some bonus pictures of Bronner's and a shot of me looking shorter than seems possible.

Martha's Vineyard - This is one of my favorite places in the world. I have gone every year (except 1998) for the last 11 years (and have the "Black Dog" t-shirts to prove it!). I get to go due to the generosity of my friend Sarah and her parents (who built the house we stay in and let their kids each have use of the house for a week out of the summer season--Sarah routinely picks the week of her birthday, which almost always involves perfect weather and frequently coincides with the Agricultural Fair). This year we got to see fireworks for Sarah's birthday. I finally bought one of those ribbon-on-a-stick things at the toy store--I frequently get in trouble for playing with the toys at the store and figured I should finally buy one of these things. We go to the yarn store, eat fabulous sandwiches at Humphrey's, drive all over the island, spend time at the beach, go see movies, and spend more than a little time watching movies and knitting. I wish we had busted out the Wii, though. I'd still like to try it.

On my way home, I waited in the airport at my gate next to a gaggle of women who had just been to a convention for Weight Watchers employees. They talked about points and whether or not they bothered using the "activity points" they were entitled to, running discussion groups, and the importance of drinking lots of water. The lady sitting next to me went to get some food and came back with a tuna salad sandwich. She then launched into an explanation of how she initially thought the turkey sandwich would be "better" until she read the label and saw the calories and fat content of each sandwich. The turkey apparently had cheese, mayo, AND pesto--making the tuna a more diet-friendly choice. She whipped out some kind of little device for calculating her points.

I felt very odd sitting there next to women who are obsessed with and employed by the business of losing weight. I keep getting told that I need to eat more because I shouldn't be losing any more weight. Lita doesn't care what I eat--ice cream, bacon, whatever--as long as I eat.

Summer is over, the students are back on campus, and I had some exciting new technology come into my life yesterday. For work I have a shiny new MacBook Pro--I am going to install VMware and then Windows XP so that I can check my web stuff in an array of browsers and platforms. Some of the work I do that looks great in Firefox for Mac doesn't look so great on IE for Windows. I won't have to switch between machines anymore to doublecheck. W00t!

Then when I got home, Brian was so excited about the fact that my birthday present had arrived, that he wanted to give it to me right away. I am very bad at insisting that he save my presents for my actual birthday (which is in October), so I agreed it would be delightful to open it immediately.

It was a box from Amazon containing...AN AMAZON KINDLE! Wheeeeeeeeeeee! I have lots of Amazon credit built up from my associates site (which I really need to update) and have already charged that bad boy up and acquired a few books. It can also store Word or HTML documents and can play mp3s and books in Audible format. I'm so excited! The screen looks awesome. I keep accidentally hitting the "next page" bar but speed-reading is an excellent skill to develop, right? Brian is the best. I also know who else is responsible; you know who you are, and you rock also. :)

The dread of my upcoming paracentesis is not quite enough to dampen my spirits today. Whereas I do get rather upset at the prospect of being jabbed in the belly with a ginormous needle like I am some kind of Capri Sun juice pouch, I have fun toys to come home to, Brian's supportive (and extremely comforting) presence, and the prospect of at least feeling better when the ordeal is over. This is not a procedure I will ever enjoy. Before the last one I had something of a hysterical melt-down and have permission to partake of an extra dose of the Xanax. My liver functions and tumor counts seem to be improving, so it's possible I might be able to have fewer of these taps--or at least spread them out more. I wish I didn't have to do them at all, but I suppose the alternative (exploding like that guy at the end of Monty Python's The Meaning of Life) isn't any better.

The Five-Year Mark

2008-08-08T14:09:00.004-04:00

Five years ago today I had a biopsy. I was very surprised that my biopsy would involve taking out a golf-ball sized chunk since I thought biopsies consisted of taking a core sample with a needle. Both are true, but I didn't have a solid mass so they needed to do surgery. My biopsy was a guided wire procedure (which I will never submit to again) and I fainted while sitting at the mammogram machine. After the biopsy and after puking from the anesthesia, they let me go home.

I went to a computer training class the next day. I remember very clearly sitting in the classroom and that I had a PC in front of me and that the instructor wrote some stuff on the board. I remember that I walked to Einstein Bagel for lunch and I remember what I had to eat. I haven't the slightest idea of the content of the class, though. It was a class on cgi, which I haven't the slightest idea how to use.

The next week I had an appointment with the surgeon, who did not have the pathology results yet. I asked him if my breast (which looked very sad, bruised, and deflated) would return to a natural shape on its own, or what. He told me it would fill out on its own and to quit looking in the mirror.

A couple of days later, I got a call from the surgeon's office to set up another appointment to go over the results. It was strongly suggested that I have someone with me. Soon afterwards I got a very panicked call from my primary care physician. She was very nervous, and didn't know what to say. So she blurted out that she was so sorry that the results showed I had cancer.

I stood in my kitchen and thought, "No wonder they want somebody to come with me to see the surgeon."

"Ok," I said.

It wasn't really Ok.

Whatever happened to, "You're so young, these things are almost always nothing," or "3 out of 4 times it turns out to be harmless"? By the time I got to my biopsy, it was "You have a 90% chance of being totally fine."

My mom took me to the appointment. Dr. Barbi had a box of tissues, many explanatory brochures and pictures, as well as sample drains to show me what would be involved to care for the wounds. I sat there dully, listening to him say how lucky it was that this was caught early. When it's caught early, treatment is very successful.

I had a tiny bit of microinvasion. Some cells were beginning to escape the confines of the ducts, but he was satisfied that this was still extremely early. I needed to coordinate with a plastic surgeon, and there were two that he typically worked with. I called the first name on the list and then had surgery in November.

Tiny cells just starting to bust out.

Diagnosis in August, surgery in November. Was that too long? No, I was assured. Plus, I opted to do chemotherapy which was sure to take care of any pesky floating cancer cells. 98% success rate for the type of cancer I had.

I "sailed" through treatment. I was called a "trooper." Success!

And technically, I am a "success." It's one of the happier statistics that I can say I'm still alive five years after treatment. I had always assumed that this meant being disease free five years later, but it does not.

I kind of hoped for more.

I certainly didn't hope for a broken, mangled hip. I didn't hope for an enlarged spleen and ascites from a damaged liver. I didn't hope for tumors in my brain. I didn't hope for multiple hospitalizations both from the disease itself and secondary infections.

The fact that I feel reasonably well, although somewhat wimpy and water-logged is amazing, but I still carry around anger about what I perceive as the "lies" that I was told about this condition. I still wonder about the gap between diagnosis and treatment. I wonder about the lack of follow-up and certainty on the part of my doctors that my early-stage cancer was treated with spectacular success, which resulted in months of inappropriately treated agony.

And I wonder why the emphasis on "early detection" is more evident than research for treatment of people who are still alive after five years, but waiting for a cure.

I Has a Sad

2008-07-22T22:26:00.004-04:00

Today I found out that a former boss (well, technically my boss's boss) passed away last Thursday. Dr. Hackney was the head of the Counseling department at Macomb Community College. I worked there in the summers while I was home from college. After a stint at the Learning Center, I went back to Counseling, where my job was to help new students get started, and help associate degree students figure out what classes they needed.

The Macomb Assistance Center was often a very fun place to be. Once I was helping a student on the phone when I looked up and noticed something odd...

"First you fill out the application, then you will need to take the--OH MY GOD!" My fellow Assistance Center technicians Robyn and Lori had glued tiny photocopies of David Duchovny's head to all of the push pins on my bulletin board.

Computing services on campus was not always concerned about securing desktop PCs, so at the prompting of Dr. Hackney's secretary, I installed a piece of software on his machine that replaced the regular system beeps and sounds with video and audio clips from Star Wars. The next time he came in, his computer greeted him with "Help me, Obi Wan Kenobi; you're my only hope."

Dr. Hackney was very proud of his Tickle-Me Elmo.

He was very kind and low key. He was the only African-American administrator on campus (at that time at any rate...I don't know what the situation is now), which I imagine was somewhat difficult. I respected him immensely.

I left in 1999, and Dr. Hackney retired in 2002. I hadn't seen him in years, then Brian and I ran into him at the radiation oncology department at the hospital this past February. He recognized me first and said hi. We talked a little bit, introduced spouses, and then lapsed into silence, because what do you really say when you're waiting to be bombarded with radiation for cancer?

Last Thursday I wasn't feeling all that well, but I met Robyn and Lori for dinner. I mentioned having seen Dr. Hackney at the hospital a few months ago, and we reminisced about him and about our days together in the same office.

That's the night he passed away. I can only offer my deepest condolences and sympathy to his family and loved ones.

Larry Heywood Hackney, Ph.D
1938-2008

STOP THE PRESSES!

2008-07-07T22:14:00.005-04:00

Local Woman Finally Normal

At a body mass index (BMI) of 23.8, Janet Elkins has achieved a weight in the "normal" range. This has only happened once before in her lifetime. How was this remarkable milestone achieved? It was made possible through the miracle of having a needle jammed into a pocket of fluid in her belly and having greenish ooze sucked out by means of a catheter, a length of tubing, and special vacuum bottles. 2.4 liters were removed, for an approximate loss of 3.6 pounds in a single day.

The procedure, which Mrs. Elkins referred to as "uncomfortable and kind of gross," is also called a paracentesis.

"Normal" BMI is healthy, right?

Recent reports indicate that those with a BMI at the lower end of the "healthy" range, or 19.1, are at lower risk of breast cancer than people who weigh more. At such a low body weight, this would place Elkins in heroin chic territory, particularly since she has lost a great deal of muscle mass due to recent hospitalizations. The way to build muscle mass is by exercising and consuming calories high in protein.

For someone who already has cancer, the normal rules do not apply. Fatigue, lack of appetite, a swollen abdomen which makes consuming more than a few bites at a time problematic all contribute to making muscle-building extremely difficult.

Doctor's Orders

The last time Elkins managed to reach a BMI in the "normal" range, it was also not through conscientious diet and exercise. It was because anxiety and narcotic pain medications (prescribed for metastatic bone pain) were causing her to vomit uncontrollably. Doctors were concerned about her weight loss then, and are concerned about it now.

When asked what Elkins should be eating, her nurse practitioner said, "I don't care. Whatever sounds good." High-quality food is preferable, but in light of uncontrolled weight loss, even high-fat foods like ice cream, steak, potato salad, and peanut butter are fine. Protein and calories are of utmost importance right now.

Smoothies have been soundly rejected by the patient, as have most sweets. "Things just don't taste right," she says. "And when eating is no fun, it becomes a horrible chore. I know I need to try to eat more, but it's hard."

Coping Techniques

Elkins has decided the best approach would be to try to eat something small at least once per hour. She has also replaced skim milk with two percent milk. Whereas most sweets and starches are not palatable to her at the moment, she finds steak to be extremely satisfying. A recent trip to Longhorn will provide grazing materials for tomorrow. Her Grandmother's bacon-suffused potato salad was recently a hit and is a possibility for further snacking.

Diet sodas and beverages will be shelved in favor of higher-calorie fare. Mr. Elkins has procured a supply of mild-flavored string cheese that the patient has found to be tasty. And peanut butter sandwiches or peanut butter crackers will be a staple at work.

"I think it's kind of good," comments Elkins, "that I started out from a point of weighing more. If I were a naturally skinny person I'd be horrifically underweight by now. Normal rules of health just don't apply to somebody in my position. I'd like to be at a point where I can exercise and eat more healthy foods, but I don't have the strength to even hoist myself up from a kneeling position, and lower calorie foods are just too bulky for my bloated belly."

"I regret being as scrawny as I am even now," she goes on. "I used to have crazy strong legs. I could do leg-presses like nobody's business."

She looks wistful for a moment, then turns away.

Brain Update

2008-07-01T21:42:00.004-04:00

I'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.

Since 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?"

I've Got You.....Under My Skin....

2008-06-24T23:09:00.007-04:00

"Ascites" is a term used to describe pockets of fluid buildup in the abdomen, usually as a result of an improperly functioning liver.

I've been losing weight due to my appetite issues, but my belly is huge and round. I must look like Tik-Tok of Oz. My arms are particularly scrawny. I've almost got bony shoulders, which seems bizarre. My parts are all supposed to be soft and squishy. My belly in particular should squoosh nicely, but it's all taut with fluid.

I've been getting fluid buildup in my legs and feet, but edema is something that rather suffuses the tissue and makes it sort of like a wet sponge. I deal with that by wearing my thigh-high compression stockings (which, by the end of the day, leave me with "muffin-tops" on both legs)--the black ones are particularly sexy.

Ascites are actually pockets of fluid that can be drained. Since my belly was sounding like a ripe watermelon when thumped, I had an appointment last Wednesday to get the stuff sucked out (paracentesis), and I was rather upset at the prospect of giant sucky needles. So I asked if taking a "happy pill" would be out of the question. It wasn't, so I showed up at the hospital with Brian and my friend, Xanax.

The technician or doctor or whatever she was first did an ultrasound to locate the most likely entry point, which was determined to be on my lower left side. Advising me to not look at any of the equipment, first they gave me a shot of a local anesthetic. The needle would go in a little bit, inject something numbing, go in a little more, inject more numbing stuff, etc. Then the next thing I knew, a plastic straw was sticking out of my belly, which they hooked up to some tubing and then they connected the tubing with a bottle that was empty and vacuum-sealed.

The bottle started to suck away and filled up with an unholy greenish liquid. A second bottle was hooked up, but the suction petered out after a bit. They thought perhaps if I tilted on my side, the liquid on my right side would slosh over and get picked up. No such luck, so they unhooked the bottle and started pulling out more fluid with a GIANT syringe.

It was two and a half liters, well short of the 5 they said was that day's potential maximum. Subsequent taps might take as much as 8 liters. Ack! I felt soooooooo much better that afternoon that Brian and I celebrated at Longhorn.

Alas, by Friday I was feeling bloaty again. I'm not as uncomfortable as I was before the procedure, but I've been scheduled for another on this Thursday. Friday I will finally have a brain scan (MRI).

In other news, my various counts are no worse than last week, some are slightly better, which will hopefully be the trend. My white blood cell counts were very low, however, and Dr. Hayes and Lita decided not to treat me with Gemzar today. The plan is to instead try an every-other-week schedule, hopefully giving my blood counts time to recover. (I neglected to bring up the subject of Neupogen, which is the devil and hurts like a mofo...if waiting a week will help my white blood cells recover, I'm not going to volunteer for stinging agony.)

Xeloda a Bust: now we try Gemzar

2008-06-17T17:40:00.004-04:00

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!

Having Solved the "Skullet" Problem...

2008-06-11T15:34:00.005-04:00

Do you think they'll let me wear my hair like this to work?

Brian and I went to the Detroit Festival of the Arts last Saturday, and went to see the performance art group "Osadia." They do creative hair-sculpture onstage to techno versions of classical music. We saw them a few years ago and found them highly entertaining, so this time we made sure to get good seats.

When the performers take the stage, they select audience members. They communicate non-verbally, which can cause a little confusion if multiple people think they've been picked.

I got picked first! The performer wearing red was a man. He looked around the crowd for his first subject; people were raising their hands anxiously like Hermione Grainger in potions class. I tentative put up my hand and he pointed and nodded at me right away. When I whipped off my bandanna, displaying an obviously bald head, the crowd cheered. Peruse the photo album and you'll see a sequence of events leading to my ending up with a fabulous "hair" style and rad makeup. I had great fun the rest of the day. People came up to me telling me how great I looked, and we got stopped several times so people could take pictures.

Driving home was particularly funny, because I kept trying to get the other drivers' attention. It is amazing how many people just don't look around when they're driving. An older lady did notice, and looked at me disapprovingly. A woman maybe in her 20's saw me and tried conspicuously not to look my way or stare. And another guy was definitely checking out the bizarreness via his sideview mirror, but nobody else looked. (It was a long drive, too.)

Oh well. I have the pictures. And the memory of how much fun that day was.

Slight Medical Update

I went to see my general practitioner today, who was of the opinion--after thumping on my belly like it was a ripe watermelon--that I seem to have a lot of air in there, and that regular meals will help. I wear thigh-high compression stockings that look sort of normal in the morning, but then by the afternoon I have muffin-tops on both of my legs. Food is still very gross to me (except for the Longhorn steak my dad treated us to last night...I was going to link to their website, but music starts playing right away so I opted not to. It's http://www.longhornsteakhouse.com if you really want to go there and listen to the song) so I'm seeing a nutritionist on Tuesday. I went in for I.V. hydration last week and may do so again if I'm still feeling like a raisin in the sun...

I also went back to work last week, found out interesting things about my work this week and am wondering if it's too soon to go on vacation!

Head Start on my Mullet

2008-06-06T10:29:00.005-04:00

Since going through whole-brain radiation, I have lost most of the hair on my head. I'm told it may or may not grow back (people who have gone through this assure me that it probably will). In the meantime, the hairs that are growing have created the stupidest hair-growth pattern ever, aside from what Mr. Strangebeard has going on. That's one helluva cowlick.

Business in the Front, Party in the Back

Anyway, you know those hairs on the back of your neck, which, if you've ever gotten a really short haircut the stylist whips out an electric clipper or a straight razor to hack off? Those are the hairs that are growing normally. (I suppose if the rest of my hair fails to ever grow back I'll have a skullet.) Even better is the fact that this particular hair used to grow in a corkscrew pattern...if the curl comes back, I'll be able to save on mullet perms. (The "permullet" photo has been edited to protect the identity of the doofus pictured.) I just need to get the 80's version of Guitar Hero and I'll be set.

I Got Trapped in an Episode of "House"

2008-05-13T00:21:00.000-04:00

Only one in which there was no brilliant, cranky Head Doctor who would come up with the solution and heal me of my infirmities.

A couple of weeks ago, during a visit by my mom on Sunday, I got very cold. Teeth-chatteringly cold. After our card game was over and she went home, I went to bed and huddled under many blankets. Brian discovered that I actually had a pretty high fever. So he called the oncologist on call, who suggested taking some tylenol and watching my temperature, and if there was no improvement, come to the hospital in the morning.

The next morning there wasn't an improvement (although I felt immensely better), so my nurse practitioner told me to come in, have blood drawn, get a chest ex-ray, and then go up to "bedside" in the infusion area (a opposed to the area where the infusion chairs are), where they got all freaked out about my "shortness of breath" (with my stomach all bloated, of course my lungs can't fill up really well), so they did the test where they do your blood pressure lying down, then sitting, then standing. They did this several times. Of course my blood pressure is very low to begin with, but it's especially erratic since they have to use either my right forearm or my leg.

Their results were so alarming that they decided I needed a CT scan of my chest. This makes me cry, because it means insertion of an IV. They eventually get the thing inserted, and then it turns out that the only CT machine available is in the ER...when I get down to ER, the CT technicians look at my IV and say, "Oh no, that one's too small." Blarrrrrg. So I get to cry again as they stab me again in the arm. They made a mess of it, too, and got blood on my fuzzy "Snoop Dog" hat. It also turns out that I have developed an allergy to the iodine conrast, so I couldn't breathe for a short while after the test. They didn't believe me and thought I was just "freaking out."

So they take me back to "bedside," where my oncologist agrees that I should be admitted.

Sadly they could not admit me directly to a room, but I had to go through ER. So I sat in triage in ER for several hours. Then a room opened up in ER and I had an EKG, many blood tests (with blood taken both from my port and from my arm) The ER doctor came in and told me my CT scan showed a pulmonary embolism. Then, no it was actually a "chronic embolism" which means it was a blood clot that was surrounded by other tissue and had been there for a long time and wasn't doing any harm, but perhaps I should have a mesh thingy surgically implanted to keep blood clots from my legs from reaching any vital organs.

Then they finally admitted me to the hospital proper, and I was put into a double room with a diabetic woman who had been there a month and complained constantly.

I can't say I blame her.

So then the doctors decided I didn't have an embolism at all, and that my low blood pressure/shortness of breath might be pneumonia or some kind of viral or bacterial infection. So they started giving me crazy amounts of antibiotics, at which point I developed horrible digestive issues. They had to bring me a bedside commode. They thought maybe whatever infection I was dealing with was making me anemic, so they decided to give me a blood transfusion. (It turns out I am type A-positive, which I did not know before).

They kept coming to test my blood--they had to take blood both from my port, and from another spot in my arm (in case it was the port that was infected)--and every test they wanted to do they told me, "We'll have the results in three days." But you already TOOK blood for tests and it's been three days....where are those results? Grrrrr.

I developed a dry cough (they were giving me oxygen at night because I was having some trouble getting enough air), so the respiratory people got all excited and wanted to give me this test where they made me breathe albuterol through a tube and then after a few minutes of this, spit sputum into a cup for testing. Well, my cough was a DRY cough. They were never able to get a sample from me, although they tried twice.

The freaky thing is that they also made my roommate do the albuterol thing and try to spit into the little cup, and then when she got discharged (after a month, the poor lady), and then they did it to the next roommate I had. I wonder if there was something going around the hospital, or what.

After about seven days of misery and crappy food and trying (sometimes unsuccessfully) to make it to the commode, they sent a physical therapist, who brought me a walker, a theraband, and a little pedal thing that sits on the floor and is sort of like a thing that makes whatever chair you're in into a recumbent bicycle. Great. Thanks, now I get to have a walker again. And the theraband was for my arms. I took the walker and theraband home; I'm not sure if I was supposed to keep the pedal thing or not, but I decided it was stupid and the hospital PT was useless. (I'm now getting PT at home, and she actually gave me USEFUL exercises to do.)

They never did decide what I might be infected with...if it was bacterial, viral, side effects from Xeloda, or what. So I got discharged after about nine days, just in time to go to Brian's graduation, weaker than I have been in a long time, coughing, and wearing a diaper.

Luckily I am getting stronger. I'm still wearing a diaper, though (at least I am today)...and I've got a bedside commode (which I have not needed yet, thank goodness because I've been sleeping very deeply), a walker for very long walks, and my feet swell up like sausages. I ranted to my oncologist and expressed relief that all the tests at least confirmed that I do not have EBOLA. I don't think he appreciated my outrage, because of course they've got my best interests in mind and are concerned for my welfare.

I FELT BETTER BEFORE BEING HOSPITALIZED.

Grrrrr. I hope there WAS some kind of bug floating around my system that got killed, because I'm pissed off and hate having to try to rebuild my strength and deal with the cough and the digestive issues. OH, also food is now disgusting to me I think because of the medications I've been given (usually antibiotics do this) or maybe the Xeloda itself is messing up my appetite. I don't have any nausea, it's just that when I put food into my mouth, it tastes all gross and metallic and I lose interest in swallowing it. It's even worse when there's a distinctive texture. It's sort of like I'll chew a mouthful of food, and then suddenly I realize that I have this nasty blob of chewed food in my mouth that I can't quite bring myself to swallow, but you can't spit it out.

I bet House could figure it out.

I Wore Plastic Underpants to my Husband's Graduation

2008-05-04T18:20:00.005-04:00

I hope nobody noticed. The package claims that they are "discreet" but they seemed awfully lumpy and crinkly to me. So I dug out a skirt that is rather too big and tried to wear tops that would cover up any unusual bulging.

Luckily, it rained. So my mom went and got herself a green Wayne State umbrella, and me a clear plastic "reusable" poncho. I was glad of the poncho because I figured it would disguise any crinkly noises.

My mom and I got there pretty early, and were herded to the walker-not-wheelchair area. Yes, the handicapped people were being segregated from each other. It rained off and on, but the array of colorful umbrellas was actually pretty festive. As were the escaped mylar balloons, which, when I first saw one, I was convinced was either a flying rubber raft or a UFO.

I've been ruined forever by science fiction.

We nearly sat through the entire ceremony, but lost fortitude as the last of the people were crossing the stage to get their faux rolled-up diplomas. They won't actually send the nice certificates until later. But it doesn't matter. I am so proud of Brian and of what he has accomplished.

Navigating the regulations of the LIS degree and having to negotiate with the head of the program to be allowed to continue (due to time issues), working full time, taking care of a sick wife who was hospitalized many times during his academic travails, and just managing to get the actual academic work done...I don't know that he believed he could do it...but I did. I know what kind of man he is, even if he isn't sure himself.

I am particularly haunted by a ghost who isn't mine. There is a person in Brian's past who chose to throw her own life away, who was so mired in despair that she couldn't imagine anyone else's success. She told him he would fail when he said he was going to Detroit to be in the LIS program.

This has tormented me. When Brian and I met, it was partly the fact that I was a librian and he was in library school that brought us together--we didn't actually have that much in common at the time.... When I got very sick the first time with my broken hip, it was his impulse to quit school, quit work, and do nothing but spend all day, every day, taking care of me.

I didn't want that. I wanted Brian to continue, to do what's best for him and to silence that voice that haunted me, that I never heard, that I was only ever told about afterwards.

"You won't succeed."

Wrong.

My Husband, Brian James Elkins, on the day of Saturday, May 3, 2008 did receive his Master's Degree in Library Information Science from Wayne State University in Detroit, Michigan, while his wife, Janet Lee Elkins sat in the audience whooping with joy, wearing plastic underpants.

This is Brian's accomplishment, not mine, but I feel vindicated and I don't mind telling that stupid ghostly voice: "toldja so."

News on Our Royal Baby

2008-04-18T14:54:00.003-04:00

I've been asked about how Jem is doing.

At 22 days, the pupa's top half compressed and the outer clear skin hardened into a protective shell. The Pupae or Chrysalis hung for more than a week. look at Picture #2 and you will see gold spots and a golden ring around the top. Chrysalis is a Greek word meaning golden crown.

This is a point at which butterfly pupae can be handled transported because they are dormant. It is also when the sex of the pupa can be determined for the first time. Check out the explanation.

What we've been waiting for

Jem has wings and is on her way!

See Jem's final Live Monarch Update page for close-ups and a movie file of Jem's wings stretching out...Our little Jem is all grown up. They leave home so fast...*sniff!*

Treatments

2008-04-08T23:27:00.003-04:00

My treatment is being resumed, starting tomorrow.

Xeloda it is. I had a minor meltdown in the exam room today at my appointment but after going through one of those mini-boxes of useless half-size tissues, I got the reasonably good news that my liver hasn't yet imploded and that I can begin doing the pills without having to also do an infusion of Gemzar at the same time.

I have the informational packets, I have the pills, I have another am/pm pill case thing to add to my array of am/pm/middle-of-the-day pill cases, and I am ready to go.

I am so relieved.

After that my Mom took me to the new JC Penney in Canton where I did retail therapy. I got some Urban Decay eye primer and draperies! The living room will have some color soon and I ordered thermals plus got some stuff for Brian's office. It remains to be seen how much energy I will have for putting the stuff up. I still have to put the valance up in the guest room and haven't gotten around to it yet.

Brian finds my obsession with the curtains bizarre, I'm sure, but window treatments are important.

It's MY Sandwich!

2008-04-03T18:21:00.002-04:00

Loopy here from a "basal ganglia stellate procedure" to help knock out my post-herpetic neuralgia. I may have to do this several more times. Sadly, after the procedure today I can't really talk or swallow, so taking my mom to my favorite deli was great for her, but my sammy is in the fridge, uneaten. I hope Brian doesn't eat it.

Also, my goal is to be taking fewer medications, but the pain doctor wants to increase the Lyrica, which is one of the ones that has a drowsiness warning on the label. I'm never going to be able to drive again. Blargh.

Jem is Truly Outrageous!

2008-03-29T07:04:00.004-04:00

At age 18 days, Jem suddenly decided to stop in the middle of eating a milkweed leaf and did this: Jem decided to spin a silk anchor like many times before, but this time turned around and "sat" on the sticky pad instead. Changes are afoot...Note that even by the afternoon, Jem was still hanging in a J position. It's like Jem knows what the coolest letter of the alphabet really is. Sorry, all you other contenders. :)

Jem must be terribly itchy at this point (like me, although certainly not because of an outbreak of shingles), because the 'pillar will start dancing frantically to get rid of the final skin before becoming a pupa.

At this point the adult butterfly parts are already visible, and the outer skin showing is now exactly the color of the plants Jem has been eating. Good luck, l'il dancing queen, young and sweet only, uh, EIGHTEEN! (Pardon my weakness for ABBA.)