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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Samson is the biblical hero whose mighty strength lay in his fabulous unshorn hair. When his hair is cut, he loses his power.

I only mention this because today I have hair again for the first time in weeks, and I feel completely and utterly exhausted. The tendrils wafting about my face are most certainly NOT imbuing me with any kind of energy, strength, verve, or power. I just want to crawl into bed and sleep, which is a little bit unfortunate because I'm not currently in a position to do so (I'm tying at work...shhhh, don't tell).

I don't know if my physical weakness today is owing to wearing hair that isn't mine, or is just a natural ebb or flow of the chemotherapy. Maybe, as with Samson, the loss of my natural hair spells weakness and feebleness. Maybe it's just a result of a draining course of medication. Maybe adding extra hair is exacerbating my weakness.

Maybe it's just coincidence and I'm being foolish.

I actually do like my new hair, but I'm not sure I have the energy to fight with the insurance company on this issue. When I asked over the phone, I was told that wigs are "not covered" by my insurance policy. The hair store advised me to refer to it as a "cranial prosthesis" and gave me a list of steps to try fighting the insurance company. After all, they would pay for a breast prosthesis if I wanted or needed one; this really isn't different--except that the top of one's head is more difficult to conceal.

I'm sure bald men everywhere are playing their tiny little violins just for me. But it's not a natural, gradual genetic circumstance that led me to this. It was sudden, shocking, and one of the more horrible outward signs of this betrayal by my body. Some of my breast cells are going nuts, have migrated, and are attacking my spine and organs; and now the treatment is leveling destruction on one of the features I've always felt pretty good about. It just isn't fair.

Of course life isn't fair, but it doesn't have to be unmitigatingly awful, either.

Brian says he likes my bald 'do. I guess it's not the worst it could be; at least the treatment seems to be having a good effect on the tumor markers. Dr. Hayes views me as a stunning success story when you compare my current status to how I was doing in December. Then, I couldn't walk, I could move without excruciating pain, I was vomiting daily, and wasn't strong enough to bear chemotherapy. I suppose I should be grateful that things are better than they were.

I still want my hair back, though, dammit.

Labels: baldness, chemo, Dr. Hayes, hair, insurance, tired, wigs

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Since I tired of the perpetual rain of short hairs, and I tired of having the coat of hair removed from my pillow after each use, I asked Brian to buzz the rest of my hair the other night. Instead of looking like Smeagol, I now resemble a slightly pasty sea urchin.

Last week I went to a swanky wig store in Birmingham, Michigan and was fitted for two "cranial prosthetics." They gave me a sheet with step-by-step details on getting your insurance company to pay for your wigs. The first advice is to not call it a wig, but a "cranial prosthesis." My insurance company has informed me that wigs are not covered under my policy. The guide sheet points out that a wig is something worn for cosmetic purposes, whereas a cranial prosthesis is worn to cover hair lost due to medical reasons, and is no different from a prosthetic worn to replicate a breast lost due to medical reasons.

The first wig was supposed to be done in a week, but I have yet to hear from the wig lady. In the meantime I am wearing scarf/hat combos. Today I look rather like a gypsy. The stubbly hairs that are left are helping hold my green-blue silk scarf in place which my dad brought back from his trip to Thailand. I'm worried it will slip and fall off, revealing my new prison-inmate 'do.

I feel very conspicuous and weird, in any case. I seriously doubt a wig will fix that, since almost everyone around me will know it's a wig.

Oh well. Damned if I do, damned if I don't.

Labels: baldness, Brian, hair, hat, insurance, scarf, wigs

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Once upon a time...

I recall encountering the story of Snow White (no relation to the nice lady with the 7 vertically challenged gentlemen) and Rose Red in my Andrew Lang fairy tale book when I was a child. I don't actually recall the plot of the story--I seldom went through it, due to my outrage at having a story with a character named Snow White who had nothing whatsoever to do with poison apples and dwarves. I don't know how the story goes, but I do know that the description of this particular Snow White is familiar: she has skin as white as snow, hair as black as coal, and lips as red as blood. I used to identify with this; my hair is very dark and I tend towards the pale end of the spectrum (fishbelly white). I'm not sure whether Rose Red matches her own name. It can't be easy to be red all the time. Maybe she was sunburned...they didn't really have sunscreen back in those days.

Today I got to be Snow White and Rose Red in the same day. I went for my third chemo treatment, and when they started it, I once again had trouble breathing and my face turned the color of a glowing traffic light indicating that you are moving through the intersection illegally.

It turns out that Taxol uses as its base a substance made from tree bark, and I do know that I am highly allergic to tree pollen (this time of year usually involves lots of nasal congestion and very itchy eyes, to which I say, "man, I'm glad I don't wear contacts"). As soon as I was able to get the nurse's attention, there was a fleet of nurses and the on-call doctor fluttering around taking my vitals, asking if I was ok, listening to my chest, and hooking up saline. They had given me a pre-infusion of benadryl to counterract the effect of the taxol, and ended up giving me even more. One of the nurses was surprised they weren't giving me this other chemo drug which has albumen as its base and fewer side-effects than taxol. "They want to be sure you've tried everything else first," one of the nurses said.

Gotcha. My insurance company did not want to fill my prescription for nexium unless I could say I have tried other antacids first, like tums, tagamet, prilosec otc, etc. Since I am not, strictly speaking, taking nexium as an antacid and rather am taking it to help control my nausea and vomiting, the hospital pretty aggressively negotiated for me.

After they gave me oxygen and I was feeling better, although woozy from all the antihistamines, they let me know that I was approved for this other chemo drug and would need to come back tomorrow to get that instead.

Another appointment is inconvenient, but at least I won't (hopefully) have breathing problems with this new drug.

Who knew a tree allergy could be so problematic?

Labels: allergy, chemo, infusion, insurance, nausea, Taxol

4 comments

My insurance company sends me periodic statements when they get billed for service by hospitals, physicians, medical professionals, et al. indicating how much money they asked for, how much they actually got, and how much I might owe.

Usually they get far less than they ask for but they seem to be ok with that.

If I ever do have to pay anything, it's usually either a $15 copay or a $30 copay for something I didn't get a referral for. I also once had a statement saying I owed $50, and that turns out to be the amount I owe for ER service if I don't manage to get a referral in the middle of an emergency. I went to the ER the day after I broke my hip and they didn't actually bill me that day, so I got a statement from M-Care telling me that I owed $50. I didn't argue; it's printed on my M-Care card.

This is why when I got a bill from the hospital for $2545.80, I nearly had a coronary, which would have required paying another $50 for an emergency visit to the ER. I got very depressed about this because I was anticipating a nice tax refund from the IRS, and am hoping to buy a new car soon because we have two very unreliable vehicles, and it's time to get something that doesn't make funny noises that make you wonder "Did I ever hear that noise before? Is that normal? Will I be able to afford the next repair bill on this thing?"

$2545.80. It came on Friday and informed me I had fourteen days to pay in full, or it would go to a collection agency, so naturally I was unable to do anything about it and had to worry all weekend.

This morning I called the hospital, and they weren't really able to tell me what the payment was for. So after physical therapy (I got treated once more with electrodes to the butt...my superpowers are going to manifest this time for sure) today I called the insurance company. After being put on hold for several minutes, the lady's conclusion was that it looked like a filing error and she said she would call me back if she found out otherwise.

I hope the phone doesn't ring soon.

Labels: hip, hospital, insurance, physical therapy, superpowers

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Firstly, I am honestly grateful that I even have health insurance, don't get me wrong. If I didn't have reasonably good health coverage, I would not be able to pay my bills and would probably have ended up moving back in with Mom and Skippy, who, while they love me--and I them, would drive me completely stark raving bonkers within a week.

I was notified in mid-September that the hospital with which my primary care doctor's office was affiliated, has decided to pull out of my insurance plan, which meant that I was going to have to choose a new primary care physician. I was not able to act on matters immediately, what with jury duty, trips, a conference, and generally being overwhelmed at how difficult it is to get things done when walking is so hard. Finally the insurance company indicated I would have to select someone by October 9. Not a problem, I thought. I went to the M-Care website and selected a PCP who is affiliated with the same health system as the doctor I'm seeing for my hip. A wise move, I thought.

My first visit to that office, already described here, was miserable. I ended up getting no help and was instead chastised for not having a health history on file with them. And given another prescription for an arthritis medication. I filled the prescription, then stuck it in one of the medicine cabinets at home where it will sit, unused.

A week later I decided it would be a good idea to get treatment for a nagging urinary tract infection, so I called and requested a same-day appointment. This time I saw a physician's assistant. This time the person examining me seemed interested and concerned about my symptoms. This time (oh how novel) he seemed to be troubled by chest pain in a patient who has a history of breast cancer.

"Do you have bone mets?" he asked.

This is not the question I really wanted to think about. I don't have an answer, and was afraid to even think it. Breast cancer, when it metastasises, often shows up in the bones, causing bone and joint pain.

"When was your last bone scan?" he wanted to know.

My last bone scan was done before my surgery, I think in October 2003. "I've had Xrays," I said. Maybe Xrays are magically good enough.

He gave me a prescription and instructions to call the hospital for a bone scan, which I agreed to do. He also wanted to know if I was going to be seeing an oncologist. At this point I got a little upset, because I had been trying to call this new doctor's office to get a referral to see Dr. Coello, my oncologist.

When you call the main number, you are told to press 2 to speak to the referral coordinator. Well, when you press 2, you don't actually get to speak to the referral coordinator. You hear a recording which says for all new and ongoing referrals, to hang up and dial the main number, then press 5 to leave a message for a physician. So I hung up, dialed the main number, pressed five, and when I tried to explain to the receptionist that I was having trouble getting a referral, she said, "Hold on," and then transferred my call. She transferred me to the referral coordinator's line, where I got to hear the message instructing me to hang up and dial the main number.

Lather, rinse, repeat.

I finally spoke to the receptionist and explained that transferring me wasn't helping, so she said, "Let me take a message and I'll give it to the referral coordinator." I am unconvinced that it went anywhere.

When I described this to the PAC seeing me that day, he got really disgusted and said that sort of thing shouldn't happen. He also told me that I would not be able to get a referral to see the person I have been seeing for the last two years, because Oakwood has oncologists on staff. My choices are:

1. find a different PCP who is part of the same network as my current oncologist
2. find a totally new oncologist who doesn't know me
3. pay exorbitantly to continue seeing someone without authorization; hope that it's not too expensive

Friday I went to see Dr. Coello, and when the lady at the front desk asked me for my referral, I completely lost it. I haltingly told her that I had been able to get one, and spent the next ten minutes weeping in their waiting room. They decided to let me see the doctor and wrangle the payment issue later. When I told him about the insurance issue, he was annoyed, but reassured me that his care of me was more or less a technicality now, since the chances of anything have spread are so remote as to be nearly impossible. He then wanted to know about my hip and chest pain, and suggested a "myotherapist" in Southfield who helped him with sciatic pain a few years ago. It really works, he claimed. It isn't covered by insurance, but it will be like a miracle.

Then he concluded that my chest pain was related to arthritis, and prescribed a coritcosterioid. I felt slightly better over the weekend; although the corticosteroid didn't seem to help with my chest, it made walking a little easier.

Monday as I was driving to work, I started having difficulty breathing normally. I can not take deep breaths because of the chest pain. I called and left a message for Dr. Coello. After looking at several alarming websites about potential causes of chest pain and shortness of breath (congenital heart failure, or maybe asthma. Maybe a blood clot. Or maybe severe anxiety), I called the primary care place to come in to see someone again, rather than waiting for the appointment which was scheduled for Tuesday.

I was given an appointment with the doctor I saw the first time I went there. As I was sitting in the waiting room, I noticed that well over half the patients consisted of unwed teen mothers and pregnant fifteen year olds.

The doctor was surprised I was still in pain and insisted it was musculo-skeletal. She listened to my lungs and got irked that I would not take deep breaths. She wanted to know why my paperwork had not been transferred yet, and told me that she couldn't do anything. "I am here only to help those people with sore throats and urinary tract infections and things like that they'd go to the emergency room for."

Silly me. Chest pain and shortness of breath is obviously not an emergency condition.

So I asked what I can do about "musculoskeletal pain" if anti-inflammatories have not helped. "Are you just going to prescribe another arthritis medication that doesn't work?" She came back with a prescription for Tylenol 3 (it does help with my hip, but not so much for the chest pain) and spent the last five minutes of my appointment repeatedly telling me to transfer my paperwork, keep my appointments, and see one of the doctors who is going to be at this facility longer than she will.

"Do you understand? Do you understand me?"

Good god. Don't speak to me like I'm an idiot; I comprehend that you are a patronizing [insert derogatory term here], have no interest in or ability to help me, and coming to this office at all is a complete waste of my time. These people are more concerned about paperwork than in dealing with somebody who has current problems. I understand wanting a health history, but how does the fact that you don't have information about every bladder infection I've ever had keep you from attempting to address what is wrong now?

Yesterday I got a call from Dr. Coello, who is very concerned that the medication he prescribed didn't help.He was surprised that the insurance switch has already happened; nobody told him on Friday. He wants to help me find an oncologist in this area and asked me to read off some names for him. It is important that I get a bone scan.

I am rather freaked out about the specialist being worried.

He is going to send his records to the PAC who prescribed my upcoming bone scan; I'm not sure I'll necessarily be going back there. They're used to dealing with knocked-up teenagers and wheezy old people; I don't want to go there EVER AGAIN.

Tomorrow I will ask the pain dude in Canton if he could recommend any of the people at his facility, or if he's familiar or could ask around about any of the oncologists on my list.

Also, F*CK Oakwood. My other primary care physician's office didn't refuse to give me referrals to out-of-network doctors. That's probably why they're no longer part of my bloody insurance plan.

Labels: Bon Secours, bone scan, conference, Dr. Coello, hip, hospital, insurance, jury duty, M-Care, metastasis, Oakwood, referrals, x-rays

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