Janet's Blog

I am slowly tapering of the decadron, which has been keeping me up at night and has made me extremely cranky during the day.

This is a relief.

My itchiness is gone; I have some dry skin where the shingles were, but that is much improved as well.

Yesterday we had a visit from a special home-program where my insurance will offer as little or as much home support as we deem necessary--this could be home nursing visits, occasional accompaniment to appointments, light help around the house, all-hours medical advice and assistance, and the social workers are helping to look into transportation options that might be a good idea for now. They were incredibly nice, and I'll be interested to see if I can actually think of stuff I'd like help with.

I like to be independent, so it's tough for me to think of things for people to come do, although if somebody wants to vacuum, I could totally get behind that!

We also went to a lawyer's office yesterday where we got help setting up some basic documents that everyone should have. This I don't like thinking about, but it's useful for people to have power of attorney and wills and living trusts and what not. I found the experience refreshingly non-smarmy, and it's good to have things arranged even if they're unpleasant to think about.

We also stopped at Zingerman's again--this time the potato salad was swiss and we got some excellent macaroni and cheese. The deli seems weird to find if you're not pedestrian, but we will make a heroic effort to take any guests there who come and visit. I swear to you, the food really is phenomenal.

Monday is my last radiation visit (for now, although the neuro-onc, Dr. Lisa Rodgers, did indicate she would speak to Dr. Hayman about whether two lesions in my spine needed to be addressed before they begin intruding with my spinal column).

Monday is also Brian and my second wedding anniversary. :D

We both failed to believe when we got married that I would get to this point. I am so very happy to be wrong. Celebration, alas, will have to wait for a day Brian is not doing his practicum at Plymouth Public Library. It's his last semester in the LIS program at Wayne State, and I'm so very proud of what he's accomplished.

We will celebrate Wednesday, I think.

We also totally forgot about Baxter's birthday on the 21st, but he'll be getting a nice, juicy bone on Sunday so maybe he won't mind.

Labels: anniversary, Baxter, Brian, Decadron, Dr. Hayes, Dr. Lisa Rodgers, insurance, lawyer, library, Plymouth Public, shingles, Wayne State, WBR, wedding, Zingerman's

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Earlier today (I still insist it's "Tuesday" because I have not yet slept through the night to wake up on Wednesday...ignore the time stamp behind the curtain, people) I went out to walk Baxter.

I was feeling pretty good and had just completed an excellent day with my mom doing some retail therapy to get supplies for knitting some awesome stuff. I tripped, and after stumbling a few feet, totally unable to get my toes back under me, I went over like old-growth timber. I actually made an effort to land not on my hands and knees, but to distribute my weight. I feel pretty fortunate that I was wearing a very cushiony full coat and thick mittens.

I scraped my knee, slapped my left hand on the ground just too hard, ruined my boot, and was very frightened (the last time I fell I broke my hip and was in agony for months afterwards). As I lay there, stunned, Baxter tried to help me by licking my face and a lady in an SUV pulled up to ask if I were ok. It takes me a while to get up from the ground because my legs are quite weak, but I finally staggered to my feet and offered her a "thumbs up" and said I was fine.

My hands have been shaking.

The troubling things are these: the walkway was totally dry. What if I fell because my brain seized, and not because I actually tripped? What if it happens again? What if the falling jarred my brain in some way and moved my lesions around? I have appointments with various brain-people this week; I need to be sure to tell them about the incident.

Brian is now very worried and keeps asking if I "broke" something.

At least now I have an opportunity to use one of my bacon bandaids.

Labels: Baxter, Brian, mom

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I am once again going for scans tomorrow. This is icky for a variety of reasons: first, barium is nasty and careens through the digestive system like a foamy, liquid freight train. I call it "barfium." Secondly: they scheduled my CT scan for 3pm, ensuring that I will be as hungry and cranky as possible. Thirdly: I had my last scan not so long ago and am dismayed that my liver counts and tumor marker counts appear to warrant scans again so soon.

I tried to ask for the kind of barium preparation that is a powder and can be mixed with clear liquid (like water or fruit juice), but Lita was extremely skeptical about whether our equipment is able to detect that particular kind of barium. Who knew that the stuff they make you chug or that they squirt into you might be hardware-specific? I never followed up on this so will be drinking two large cups of berry-flavored foam that weigh five pounds each tomorrow around 2:00.

I hate that my scan was scheduled for the afternoon. I will be able to eat breakfast, but not lunch. I get very cranky (and fatigued and become filled with low blood sugar-induced despair) when I can't eat lunch. If the scan were in the morning, I wouldn't mind because I'm used to fasting over night. As it is, I will get more and more irritated and crabby as the day wears on, and I have already apologized to my mom (who will be accompanying me to the appointment) for the fact that I will probably be very unpleasant company. The bone scan injection is at 4, then I have to come back at 8. To make things even more "convenient," the person who did the scheduling attempted to switch my infusion to noon.

That's right--I get chemo the same day. My appointment was at 9, so I planned to enjoy a muffin and relax at the Canton center, where it's very pleasant, low-key, and Brian and I can watch dvds without being cramped in to a huge assembly line of sick people. Switching the appointment to noon does not make it better. I'd have trouble getting from Canton to the hospital in time, and would completely miss out on the most excellent baked goods. I guess they were thinking that grouping things together would disrupt my day less, but I really don't need my day to be a solid mass of medical procedure, thank you. I'm happy to stagger things. Even the 3-4 hour gap between the injection and the bone scan is ok--it will give me time to go have dinner with my mom (or at least allow her to frantically acquire some chicken nuggets from a drive-thru to stuff into my mouth before she has to strangle me).

Results should be available Thursday morning. I certainly don't want bad news, although more of the same results will be disquieting, too. I don't want to just barely hang on, I want to see improvement. I'd love to have things knocked back to a degree where I could go on another chemo vacation.

Baxter is also going for medical treatment tomorrow. He is having a very special operation. I've tried to tell him that this is the consequence for "marking" the furniture in the living room, but we were going to have him fixed anyway. I have decided he is no longer allowed on the sofa and chair, except by invitation. It can be very disconcerting to have a 15 pound puppy suddenly flying at you from the ottoman, and since he seems to have the idea that the sofa and chair are HIS territory, he needs to be disabused of this notion. So far it's going reasonably well. He keeps trying, but we keep pre-empting his leaps to the sofa and squirting him with water when necessary. Oddly, he's been more pleasant in general since he's not allowed free access to the furniture.

The lesson here is that pets need boundaries. They also need to have their grown-up parts removed for the greater good.

Does anybody know of a really effective pet-odor neutralizer? I've been using one that says it has "enzyme action," but I'm dissatisfied.

Labels: barium, Baxter, bone scan, Brian, CT scan, Lita, mom, tumor marker

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(Feel free to click the image for a close-up. It's icky.)

Do you keep things in your pockets? Keys? Spare change? An empty gum wrapper? Your work ID card?

What if, when you went to reach in to your pocket to retrieve something, your fingernails didn't come out with your hand? The photo to the left illustrates a potential side-effect of Abraxane. The part of the nail below the green-black portion is the part that is still attached to my finger; all but my pinky on my right hand--and so far three of the nails on my left--have lifted off the nail bed. It's uncomfortable and troubling.

At my last doctor's appointment, I was hoping for advice that would help. Could I use nail glue to glue them down? What about stuff that might get stuck under there? Will they detach completely, or will the lifted parts grow out? Lita didn't know for sure. They might fall off completely. She did say that nails that lift from chemo treatments tend to not get nail infections, and if they smell weird, to use epsom salts. Dr. Hayes helpfully suggested, "wear nail polish."

Great.

My fingertips are sore. Typing is irritating and I can't open things very easily. Baxter has no idea that grabbing my hand with his little teeth might result in an unfortunate snack.

Finally, some non-icky photos:

Labels: Abraxane, Baxter, chemo, Dr. Hayes, Lita, nails

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Anybody remember that Far Side cartoon? Sadly, I cannot link to any panels without causing Mr. Larson distress and loss of royalties, or something.

Baxter is no longer allowed to play with the neighbor's fleabag. We will be going to the vet Saturday for vaccinations and a flea treatment. Man, I hate those things. Skippy never has fleas. I only ever noticed one flea on my dog, Tribble, and if any dog was likely to be able to harbor vermin, it would have been that one (hairball). Brian claims to have not noticed anything amiss. Since Baxter's new thing is to sit on the back of the sofa above my head (he likes to lick my bald scalp, which makes me worry about what will happen when I have follicularly challenged guests), I am rightfully concerned about this.

Baxter has also successfully managed to go down the stairs several times on his own. He will occasionally forget that he has done so, and will cry at the top of the stairs. This is both good and bad. It is good because carrying him down the stairs is perilous since he tends to be rather...squirmy. It is bad because the more independence he has, the more areas have to be manually blocked to keep him from running amok and destroying things. Puppies are not to be trusted. I dread the day he tries the basement stairs on his own. So much stuff to be destroyed...I think we are going to need some more baby gates.

Labels: baldness, Baxter, Brian

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

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

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

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

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

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

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

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Baxter Pugsley Elkins came home Sunday and has been chewing on hands and shoelaces ever since. I have been frantically googling "puppy biting" for tips on how to curtail this annoying habit; I had forgotten how bitey puppies are.

He is very cute, though. He is a "stone fawn" pug (less desirable coloring, having black hairs mixed in with the tan and a dark saddle on his back, but the AKC can sit and spin). There were three puppies left from the litter when we got there to choose: two boys and a girl. I had read that boy pugs are a bit more affectionate than the females and of the two boys, Baxter was the most interested in hanging out with us while the other two puppies careened around the room. Their dad, Buddy, was very happy to crawl into my lap and demand ear scratches. He was very friendly and, uh, substantial.

Baxter does not yet enjoy going outside, nor has he quite figured out what it is for. Brian made excellent progress with him on Tuesday, but I think the training is going to be disrupted by our work schedules. Right now Baxter is at home in the upstairs bathroom, where he can be contained. The shower curtains are tucked into the tub and the floor is covered with "wee pads." We put his woolly bed up there, too, along with some food and water.

If he gets out, he'll have access to the contents of the master bedroom, which could bode ill for shoes and clothing.

The goal is to crate train Baxter so that he won't freak out if he needs to be transported, and also so that his location can be controlled at night and we'll know where he is. So far he hasn't liked it much and spends a lot of time crying at night. Brian has been turning the white noise wave sounds on his clock radio on at night. I can still hear Baxter carrying on which makes me feel a mix of guilt/annoyance/panic/why did we get a puppy/guilt for doubting this was the best decision ever.

He's so cute, though. They don't stay puppies forever; if Buddy is any indication, Baxter will make a great companion dog.

Labels: Baxter, Brian, pug

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