Janet's Blog

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.

Labels: Brian, Decadron, hospital, Joyce, Lita, mom, MRI, radiation, Roger, shingles, spine

// posted by Janet Yanosko Elkins @ 3:45 PM

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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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Thank all that is holy.

Yesterday was the first day I did not feel like there were fire ants crawling on my torso.

I am also allowed to try to reduce my decadron so as to be able to sleep through the night. It didn't work entirely last night, but I did at least only wake up once. I am hoping my mood will improve, seeing as I have been extremely cranky, which can be very unpleasant to be around.

Hair: Not Contained

Sadly, last night I did notice that the front of my hair may be pulled off in chunks, so will most likely proactively remove it all to keep myself from sprinking it all over my hats/pillowcases/places I go in public. I am aware from experience that I will not be able to keep myself from plucking at it compulsively, which has to be gross for people around me.

Labels: baldness, Decadron, hair, shingles

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The dermatologist called yesterday morning to assure me that another one of the tests confirms my diagnosis of shingles. She asked me if I had seen any "improvement" in the five or so lesions.

Yes, they have "improved" impressively: I now have what looks almost like a port wine stain wrapping around the left half of my neck, along my jaw, behind and inside my ear.

The itch is driving me to distraction. I can't scratch it, because it hurts. She called in a prescription for a topical ointment that has done squat, as far as I can tell. I get extremely temporary relief from calamine lotion, but I can't wear that stuff out and about. My clothing is uncomfortable. I get to think about the itch frequently at night as I deal with decadron-induced insomnia.

I will continue taking the stupid giant anti-viral pills, but it seems I have to mostly wait for this thing to run its course and be miserable. In the meantime, I am told to avoid being around pregnant women and babies.

There were lots of babies at Ikea on Sunday.

Chicken pox! Getcher chicken pox here!

Labels: Decadron, dermatologist, shingles

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Shingles, which has me crabby.

Talk about insult to injury--I've been almost unreasonably optimistic and chipper since regaining my ability to communicate. I started noticing a couple of blisterlike red spots on my neck a few days ago and thought perhaps it was a reaction to the radiation. They were uncomfortable, so I put lotion on them. Today they had doubled in number. They are irritated when anything touches them, they itch, and moving my head makes the skin stretch and become more uncomfortable.

This morning I was told three times that lotion can intensify the beams and make it worse, so it was really my fault.

The techs went to get the nurse, who went to get Dr. Hayman, who decided it might be shingles and went to get a physician's assistant, who concurred but went to call the department of dermatology to have me see them today.

The doctorlet at the department of dermatology decided it was shingles, but went to get one of the supervising doctors, who agreed completely. They then asked me if it would be ok for the medical students to come and look. I said "ok," not realizing there would be about ten of them, a few of whom wanted to poke and prod. (I hope they've already had chicken-pox.) Then I had one of the blisters scraped, and under a microscope they detected a viral load, so I now get to take--in addition to the stuff I was given for the brain thing--the most enormous dark blue pills I have ever seen in my life. Dermatology is doing follow-up tests, as well.

At least Dr. Hayman told me it wasn't related to the radiation per se (I wonder if the steroid is suppressing my immune system) since it is directed at my brain and not at my neck/chest area. What, am I under stress or something?

The good news about today is that Brian and I went to Zingerman's in Ann Arbor for some really excellent sandwiches and baked goods. I now know where to get gelato, too. Their foods all rock, and you might want to check them out. We also managed to get out of a ticket possibly by having a hospital Radiation Oncology tag hanging from the rear-view mirror.

Labels: brain metastases, Brian, Decadron, dermatologist, doctorlets, Dr. Hayman, radiation, shingles, whole-brain radiation

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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.

Labels: aphasia, brain metastases, brain scan, Brian, CT scan, Decadron, MRI, star trek, WBR, whole-brain radiation

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I have noticed a strange phenomenon of late. I'm not sure it's more than my imagination, but I seem to have five o'clock shadow on my head.

I have not gone all cue-ball from any of my treatments and have in fact been periodically shaving my head. I have not had enough hair since February to look like anything other than an unfortunate nuclear reactor meltdown victim (or perhaps a moldy cantaloupe) and removing the fuzz has been the best way to deal with it. This time it seems different, though. I think there's more hair since switching chemotherapies. Maybe my follicles have as much vim and vigor as I do (I have so much decadron-induced vim that I'm posting to my blog in the stupid wee hours of the morning). The shadow on my head is very fine and soft, and there may not be an actual full head's worth of hair, but maybe I'll get enough to do a comb-over.

This evening Brian checked my nostrils with a penlight (I was complaining about my lack of nose hair as I reached for some yarn in a bag on the floor--my nose totally dripped on my hand) and commented that there seem to be some short ones in there. Maybe they're new, too. What I thought was my last strand of eyebrow gave up the ghost two weeks ago, but the other day I realized there are about eight more little hairs to take its place.

My wigs are very pretty and mostly convincing (the only one I'm skeptical of is the blonde one, but people who don't know me well are always raving about my "highlights" and don't notice anything amiss), but it does get tiresome to wear them. The convenience does not entirely negate the itchiness, heat, and worry that a vigorous sneeze could dislodge something at the most inopportune moment. Mousy fuzz of indeterminate color would be a welcome change.

Labels: baldness, Brian, chemo, Decadron, eyebrows, hair, wigs

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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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My CT scan results came back showing improvement. Since there was still some concern about why my liver counts were off, I had to wait until the blood test results were back on Tuesday before going to the infusion area.

It took hours.

It was possible that the Abraxane had ceased to be effective or was causing the liver problems, in which case Dr. Hayes mentioned having me participate in a research study that involves two chemo medications taken orally.

Whereas I wouldn't mind being able to take pills, the prospect of having to move on to the next chemotherapy drug did not make me happy. There's a limited number of chemo drugs available, and I have to hope that production of new effective medications (to which I am not allergic) outpaces my disease.

Anyway, the numbers came down so I went to go be infused as normal.

I did discuss with Lita the possibility of reducing my dosage of decadron, but in the mean time am using Prescriptives foundation to at least look better. I have concluded that the acne creams are not doing squat and will need to have words with the dermatologist about it on Tuesday. Monday I am going to have words with the orthodontist, so hopefully soon I will be able to floss and eat corn on the cob.

Labels: Abraxane, blood tests, braces, chemo, CT scan, Decadron, dermatologist, Dr. Hayes, infusion, Lita, liver

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I had an appointment with the dermatologist (one of the dermatologists who is interested in how cancer treatments can affect the skin) on Tuesday, and she was puzzled because my symptoms are not typical of the cancer drugs she has looked at. Some of the chemotherapy drugs can cause acne, but I am not on one that tends to have that effect. Avastin can cause a skin rash, but it tends to present on the hands and does not resemble acne.

When I commented that I have been on Avastin consistently and the rash did not start until after resuming Abraxane, she wanted to know if they were giving me any other medications with it. "Yes," I told her. "They give me decadron."

Decadron is a steroid designed to combat the chemo side effects. In addition to making me not puke, it also makes me consume Lucky Charms like there is no tomorrow.

She suggested that she could do a biopsy of my skin to see if it looks like other cases she has seen of the skin being affected by chemo drugs, but in light of what I told her, she instructed me to ask if I had been getting Decadron while on Avastin alone (I don't think so, but I can't recall for sure) and gave me some prescriptions for a couple of goops to try. One is a topical antibiotic to be used daily and the other is a cousin of Retin-A to be used every other day. They may cause drying of the skin, but anything is better than the incessant redness, pain, itching, and daily crop of new whiteheads.

It just occurs to me that both the bottle and the tube may be larger than four ounces, so I wonder if the airline will let me take them on board an airplane when I travel. I am going to a conference in May.

Labels: Abraxane, acne, Avastin, Decadron, dermatologist

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