Janet's Blog

I think people had a good time. There were many foods. Grandma (who actually expressed shock that I could cook a turkey) would have been proud of the spread that got laid out.

Everything got done--I even managed to finish some gift knitting while the turkey was in the oven. Well, almost everything. I still need to take care of sending the remote gifts. Oh well.

My back spasms have calmed down and my flute playing at church went reasonably well. I can't say it was great, but nobody noticed anything amiss.

We are now stripping wallpaper from the kitchen walls. Sadly, there will not be enough time to totally strip and paint, but I don't care. I'm relieved to see the paisley coming off in stretchy vinyl sheets and lying in tatters on the kitchen floor. Whoever decorated this place before we moved in was demented and color-blind.

I had a CT scan on the 26th and an upcoming bone scan this Thursday; presumably I will get my results January 8. I have also started physical therapy again. I am sore, but in a way that is probably good. I'd like to be able to comfortably tie my shoes and lift my legs into the car without having to use my hands to do it. Today I had a therapist throwing a foam ball at me as I balanced on a teetering board. I'm not entirely convinced this will help with my goals, but I'm getting better at catching a foam ball while balancing on a teetering board.

Happy New Year! Pop on over for some spinach dip and sparkling grape juice, if you like. We might be awake long enough to watch the ball drop.

Labels: bone scan, Christmas, condominium, CT scan, flute, Grandma, physical therapy, wallpaper

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Check out the new November décor for Janet's Blog.

I wasn't sure I was going to keep up the holiday themes, but my dad suggested that I should do it. He said it would be like going to visit Grandma's house.

Labels: Dad, Grandma, graphics, Thanksgiving

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This past weekend I drove to Cleveland to see my dad and visit with my Grandma, aunts, one uncle, and several of my cousin's kids. On the way there, I was pulled over by one of Michigan's finest. I was driving somewhat fast-ish, and figured I deserved a speeding ticket.

When he pulled me over and asked for my license, registration, and proof of insurance, I accidentally gave him the Saturn registration and utterly failed to find my proof of insurance (which turned out to be at home in a different purse). Then he pointed out to me that my license tags had expired. Of course...my birthday came and went. I completely forgot about renewing my tags as the Secretary of State had not seen fit--for the second time this year--to send a renewal notice. Then he also pointed out that the expired registration indicated the car was a four-door and not a two-door. "Were you aware of that?"

"No," I squeaked.

He went back to his vehicle and did whatever it is they do back there while you are squirming in your seat. I might have cried a little bit. I blew my nose.

When he came back, he told me he would let me off with a warning, but I needed to get it taken care of right away. "Be careful," he told me.

I was very surprised, since I actually had committed a number of offenses (although the only one I did on purpose involved the celerity with which I was zipping down the road). I had not put on a wig that day, figuring the back would just get tangled in the car and I'd swap the bandana for hair when I got closer to Grandma's house.

Maybe I inadvertently played the cancer card. Maybe he decided not to give the bald lady a ticket because he'd feel guilty doing it.

It does happen: I think people panic and become unsettled with somebody who looks visibly ill or different. I have on more than one occasion cut to the front of the baby frappuccino line at Race for the Cure. Hollywood stars get clothes and jewelry all the time for looking abnormally fabulous; have you ever seen the amazing bags of swag they get for going to the Oscars? No one's giving me iPods, furs, and expensive perfume. No one need be jealous of us if we play the card from time to time--whether we mean to or not.

Neupogen to boost your white blood cell count: $1000
A Year's worth of chemo and Avastin: $100,000
A trip to the ER for an emergency CT scan: $50
Getting out of a ticket because you're bald and feeble: priceless.

Labels: Avastin, baldness, birthday, chemo, CT scan, Dad, Grandma, hospital, Neupogen, Race for the Cure, vacation, wigs

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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

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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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I am getting better at maneuvering with the crutches they gave me at the ER.

Thursday evening I had an appointment with Oncologist #2, Dr. Khan. Because of my extreme gimpiness, I did not have to step onto the scale (let's all be thankful for small favors), the office staff felt very sorry for me and gave me a script for a wheelchair, and somebody in the waiting room who just happens to work at Oakwood hospital in the records department told Brian she would personally make sure that the films would all be arranged for me.

Friday I received a call from somebody at Oakwood named Amy who said the films were all arranged and ready for pickup. She also noticed that I had some tests done at Oakwood Annapolis hospital and wondered if I needed anything done with those. "Yes, I need those too," I told her. She said she would take care of everything and 20 minutes later called me back to say the Annapolis films would be ready Monday.

Wow. Sometimes these people can be on the ball.

I have also called Bon Secours to get slides from the Pathology department, and still have yet to contact anyone there about the films.

Today Brian picked up a stool for the shower (something else I have in common with Grandma), and it's so nice to feel clean! I think I'd like a hand-held shower nozzle better that what we've got right now, but being able to wash my hair at all was wonderful. I'm ready for my closeup--I even put on some makeup today--and I already know my line:

God bless us, every one!

Labels: Brian, crutches, Dr. Khan, Grandma, hair, Oakwood, wheelchair

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I'm about the same height. We both wear size seven shoes. We both take lots of medications. Both of us are currently having some trouble getting around, and neither of us is going to be completing our Olympic floor exercise routine any time soon. I think I inherited Grandma's forehead. We both really dislike physical therapy. I collect dolls like Grandma does. And I fully confess I got the idea of decorating my Christmas tree in white and gold from Grandma, who did it first.

I have a broken hip, now, too.

My fall the other day put a fracture in one of the weakened areas of my pelvis. I called my pain management/physical medicine doctor (Dr. Nadjarian) this morning, who stopped short of calling me an idiot and insisted I come in for ex-rays at the emergency center that's downstairs from his office. He told me to call a cab.

I was leery, but the cab dude turned out to be very nice. He helped me to the car and turned out to be a huge proponent of librarians. In fact, he used to have a job selling books to librarians. "Those librarians can be crazy to hang out with," he said. "They get pretty wild." I commented that I think librarians tend to feel compelled to rebel against the stereotype.

"It's true," he agreed, then went on an impassioned diatribe about how libraries are not sanctified spaces of higher learning any more and he gets so angry when he sees "these kids today" yakking on their cell phones at the library. I hear ya, mister.

After a brief and confused trip upstairs, I was made to understand that I should check in at the emergency desk downstairs to be evaluated by the ER doctor. At this point Brian surprised me by showing up at the medical center; when he got my message he told work he was leaving to go to the hospital...I'm not too sure that is going to bode well for his job, but I was glad he was there with me. The ER doctor moved my leg in various directions and observed my grimace of pain and sharp intake of breath in a very clinical fashion. Then they sent me for ex-rays. (The radiology people commented they could still see the barium in my system from the CT scans.)

There probably isn't much that can be done surgically to address the fracture; it's not the kind of injury that pins or false joints can repair. Unlike Grandma, I do not need a hip replacement. They gave me crutches to walk with, advised me to keep my weight off of it, and Dr. Nadjarian said he would call UM and try to set something up with an orthopedic specialist there since I'm going to be transferring my oncology to UM anyway.

It looks like I will be spending some more time at home for a while. I just got cable and will be able to watch Trading Spaces just like I get to do at Grandma's house.

Labels: barium, Brian, Dr. Nadjarian, fracture, Grandma, hip, physical therapy, University of Michigan Cancer Center, x-rays

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