Radiation 201

The whole brouhaha about the MRI and the (rather unattractively named) fat necrosis coincided with most of my radiation treatment, so I've not had an opportunity to share all the wonderful things I'm learning about this part of the process. There's a lot of detail here, so I hope I don't bore anyone, but I find this stuff fascinating.

First: I'm down to 10 remaining treatments (out of a total of 35), and it's all gone pretty swimmingly. Yay! Now for the details.

Each weekday morning, I arrive at the cancer center and check-in at the radiation department for my 8:30 appointment. Check-in is so well done, I feel the need to describe it. :-) You just walk up to the reception window and there's a flat screen PC monitor there. Touch it and the list of appointments appears. Touch the row with your name and appointed time (I am "Karen Z") and then touch the "Check-in" button at the bottom of the screen. There. Now the folks in the radiation rooms know you're there and will be available shortly.

After I'm checked in, I walk through a door into the "Gowned waiting area" (that's actually the sign outside the door) and go into a dressing room. I disrobe from the waist up and put on a gown, put my things in a little wooden "locker", and go sit in a chair for a couple minutes.

One of the technicians escorts me to one of the two radiation rooms, which are so, so cool. All sorts of radiation goes on here, for all sorts of cancers.

When they are planning radiation treatment, they put little pin dot tattoos on the affected area. These tattoos are used in conjunction with the many (six? seven?) lasers in the radiation room to line you up the same way every day, so they can be confident they're treating the correct area. In addition to the tattoos and lasers, they also employ other tools to make sure they can line you up with the totally groovy linear accelerator that delivers the radiation. For people with pelvic and abominal cancers, there are custom-fitted foam forms: they put the foam form on the bed/platform and the patient lies down on it. Since it's molded around *your* body, it helps you to lie down in the position they want. For brain and other head/neck cancers, they have these mesh "cages" that fit around the head and shoulders. These cages also provide a grid that enables them to align things with the lasers.

For breast cancer, you lie down on a slightly inclined "board" that raises your shoulders a couple inches above your hips. You bare the breast to be treated, raise the arm on the affected side (my left arm) and rest the arm in some holders that look a lot like the stirrups you rest your legs in when getting a pap smear. They are able to move the bed/platform in very small increments to line up the tattoos with the lasers. They also sometimes use the sheet I'm lying on to move me just the eensiest amount.

When I'm all lined up and everything is calibrated, the linear accelerator (or as I've come to think of it, the "zapper") is positioned over my left shoulder (where the affected lymph nodes were). They leave the room (can you imagine how much radiation they'd experience if they stayed in the room? <shudder>) When they zap me, it's not so much for an amount of time as it is for a dose (of radiation), but the dose typically takes about 30 seconds to administer to the area where the cancer infected the lymph nodes. Then, the technicians (really wonderful, friendly people, btw) come back into the room, adjust me the slightest bit, and reposition the zapper so it's on my right side, pointing at the left breast. They leave again and my left breast gets zapped from the right side for about 20 to 25 seconds. We repeat all this for one more zap on the left side (where the tumor was), which also lasts for about 20 to 25 seconds.

When we're all done, they tell me I can lower my arm, and I go slather aloe all over the area, get dressed, and go to work.

I've got just three more of these types of treatment and then I have seven "boost" radiation treatments. For those treatments, they created a special lead plate that enables them to direct radiation to just the tumor site on my left side.

Now, you might wonder, with all this special radioactive attention, if there are any side effects? Well, lethargy can be a side effect, but given that we were able to avoid my lungs in the treatment, I'm not really experiencing any tiredness. But. Even though I use copious amounts of aloe, and Aquaphor (TM), and olive oil cream, a person can't be given what is, essentially, a sunburn everyday without some skin issues. The area where my neck meets my shoulder on the left side is pretty sunburned. It is dry and itchy and it looks very red and angry. The breast is a little red, but mostly okay, so far. And as I said, just three more of these treatments (with a two day break this weekend) and then my neck can recover.

And there you go.

When radiation is done, the plan is: see Dr. Kuan at the end of March for a check-up and some blood work (to ensure everything is returning to normal). Assuming everything is groovy, I'll wait until mid-May for another check-up and blood check (and port flush--I still have the port and we need to ensure it's not clogged, so they need to "flush" it with saline every four to six weeks). In June, I'll have a CT scan to (hopefully) verify that there is no cancer in my body. In July, I'll have a bilateral mammogram, and if that, too, looks good, I can finally have the port removed. (It's a drag to remove it only to have to put it back in, should a person need more chemo.)

And there you go.

It's Not Cancer

The lumpy stuff was, indeed, fat necrosis along with something else (we'll get a copy of the pathology report tomorrow, I hope). Frank says he already knew it, he's just glad I know now. ;-)

So, sorry for freaking everyone out.

Now I can relax and look forward to seeing San Simeon with Emily and Robert next month. Whew. I don't know what else to say. Just "whew".

Boy I love the world right now.

Almost There

A brief aside: So many times in the past half year, I've felt like that guy at the end of Star Wars--the one who is tasked with dropping a charge into the chute that will cause the explosion and destruction of the Death Star. You know him--he's the guy who is focused on his targeting device and he keeps saying, "Almost there..... almost there.... almost there...."

So here we are again. Almost there.... :-)

The biopsy went just fine this morning, though I couldn't help but get weepy. The last time I did this the result was pretty awful and it's hard for my imagination to avoid that scary place. I've been a bit of a wreck for the past several days and I've been a little crazy/grouchy with my loved ones. My poor husband. His patience seems to know no bounds.

With the stress, it's been extremely difficult for me to fall asleep the past week or so, and last night as I was preparing for bed I thought, "Well, duh" and I took an Atavan. I feel asleep with nary a hitch. Thank heavens for medication.

Dr. Wong (Sue--for your chart--he's the doctor at the mammography and imaging center, and he did the biopsy this time, as well as last time) said it could be something called fat necrosis, and the samples floated in the solution in their little jar, so there's the bit of hope to which I currently cling.

We should have results by Thursday or Friday.

Open for business

Our new office is in, yay! After moving a cabinet, packing up boxes of books, etc., and painting, California Closets finally came this week to install our new office. Here's pic of Happy Frank in the new digs. For the rest of the photos, go to Flickr.

Playing Hardball

As Dr. Kuan said yesterday, "If they (ABMG) want to play hardball, we'll play hardball."

True to her word, Dr. Champion tried valiantly to contact Dr. Wong on Monday (and yesterday) to schedule a biopsy. He moves from imaging facility to imaging facility and so he was difficult to track down but she finally got his cell phone number (they're not supposed to do that, but she can be very charming and persistent) and got him to approve a biopsy for next Tuesday morning.

Of course, she left me this message while I was meeting with Dr. Kuan yesterday, and I didn't retrieve the message until Dr. Kuan left the examination room to try to track down Dr. Wong to get him to approve a biopsy. :-) It's all very symmetrical, isn't it?

Dr. Kuan said that Alta Bates Medical Group takes an egregiously long time to approve *anything* and that Hill Physicians is much better. Unfortunately, my primary care physician is not with Hill Physicians, so, unless I have another tumor, I'll stay with the awful ABMG.

So anyway, I have an appointment next Tuesday morning, and then I'll see Dr. Champion that Friday, and Dr. Kuan again the following Tuesday. And we'll know where we stand.

Meanwhile, Dr. Kuan says the mass (or hard area, or thick skin, or whatever you want to call it) has not grown in the four weeks since she felt it. She still suspects it's scar tissue, but given the distance from the surgery site, it's better to know what it is. (And if the MRI was inconclusive, we'd have to do a biopsy anyway, so....)

It feels good to have a plan of action again, rather than just waiting (and waiting and waiting).

Oh! and our office is almost done. I took pics last night of the job halfway done. They're at our house right now, finishing up. And then we shall start emptying our garage of the multitude of boxes. I'll post pics this weekend, when everything is in its place.

Still No MRI (but I love my radiation oncologist)

The surgeon's scheduler called yesterday morning to say that though ABMG is telling us five to seven days, it's been their (the surgeon's office) experience that it takes them 15 to 20 days. She also said they had a patient who was even more clearly indicated for an MRI than I and it had been refused. They got it sorted out with the help of the insurance commission, but still. Given that Dr. Kuan felt this hard mass almost a month ago (1/15), that kind of delay is heart-breaking.

My lawyer was at home when this call came, and after taking this news from the scheduler asked me if it was time for a letter. I wholeheartedly concurred and we cranked out a letter yesterday to: the CA insurance commission, Blue Shield, Alta Bates Medical Group (the gatekeeper*), and the surgeon's office. The upshot of the letter was that this delay is unconscionable given that the surgeon, the oncologist, and the radiologist all agree it's indicated. And that if my cancer moves from a stage 2B/3A to a stage 4, and it's determined that ABMG's delay had anything to do with such an "upgrade", this letter is our stake in the ground. It's wearying, really. Conflict is not fun, but neither is letting bullies push you around, so here we are.

Meanwhile, my radiation oncologist, aptly named Dr. Champion, is frustrated and thinks that this is terrible (yay! for validation). She's going to contact Dr. Wong (the radiologist who recommended the MRI in the first place) to see if he can't just do a biopsy. And that would be lovely. So we'll see.

So, there we are. Once again, I'm weary of talking about this. As Frank noted, I am the Worst-Case Scenario Girl, and since the worst case is pretty icky here, I prefer just not to go there at all. Thank you for your continued grace and patience with me as I go about my "let's not talk about this until we know what we're talking about" stance.

*A brief explanation for those not enjoying my type of insurance. My insurance company is Blue Shield. I've had absolutely no complaints about them. They've been wonderful throughout. Likewise, my doctors--all absolutely wonderful. The problem has been the intermediary--Alta Bates Medical Group. Basically, Blue Shield pays the bills, but does not review all my claims, ABMG does. So, in a typical situation, the doctor prescribes a course of treatment, ABMG reviews and approves (or denies) it, and Blue Shield pays the bill. I'm assuming that this middle man gets some sort of cut, or gets some sort of compensation, and that expensive treatments take a bite out of their profits, and so.... something like an MRI (which is somewhat expensive) is dissuaded. My lawyer husband calls this "institutional delay" and it's not something they should be doing. But I think we all know that it's about the bottom line, and whatever a company--any company--can get away with, they will. Unfortunately, we're talking about someone's health here, which makes that posture even less palatable than ever.

Hair Today....

Some peachy fuzz-like stuff starting growing on my head right around the time of my last chemo treatment, which means it was starting to grow even while I my body was processing the Taxol. Of course, to balance this out, I've lost most of my eyebrows and eyelashes... (it's all about the yin and the yang of life, right?)

Dennis took a photo of me to post here. At first, Frank and I were hoping I would be a lovely sophisticated silver or white, but it's looking very salt & pepper, so I'm thinking I might dye it in late spring/early summer, when the hair is around an inch long.... The hair is just long enough that some folks (who don't know me) are assuming the look is intentional. Ahem. Well, that's okay, too.

MRI Update: I called ABMG yesterday to follow up on the request for authorization and was told that it would be another five to seven days. Also, the person there indicated that the request was for MRI on both breasts. This strikes me as a mistake and what might be slowing down the process. I called the surgeon's office and left a message that I wanted to ask that he resubmit this request and make it "urgent". I've not heard back from him, so I don't know if he did it and didn't call, or if it's "in their system" or what. Anyway.

My radiation oncologist, meanwhile, had me give my info to her nurse, Donna. She felt that it was very possible that the request for both breasts might slow things down. In any case, they are pursuing the approval from their camp, so maybe between the surgeon's office and the radiation oncology office....? I mean, really. It's been three weeks since Dr. Kuan felt the lump. And I'm waiting for a #*&#$ approval. Ergh. More news when I have it....

(Have you noticed the preponderance of ellipses in this entry? Reflective of my current mood, I'm sure. Just waiting.....)