The Show Must Go On

Quick update for those of you following along at home:

After all the sturm und drang, the insurance cards arrived Thursday. They were just in time for my port placement on Friday. And when we got home, there was another set of insurance cards. In case we lost the first ones maybe?

The Referral Authorizations arrived on Saturday. They said, Yes, we agree that all this chemo is medically necessary. That doesn’t mean we agree to pay for it, just that it’s necessary.

So we’re now where we were supposed to be three weeks ago. I have my port placed, and my first chemo is Tuesday. Here’s to the next 4 months, wherein I get progressively fatigued, and try to control the side effects. Yay.

Well, That Was…Fun?

Well NerdBoat definitely was fun, but I’ll talk about that in another post.

Insurance switched on March 1st. Even before that I went to the Doctor we used to have under UnitedHealth (on my own dime, natch, since she wasn’t covered by the insurance we had at that time), to let her know what was going on and what I was going to need to happen ASAP as soon as we got back from NerdBoat. She gave me all the referrals I needed, but of course, scheduling things had to wait until the new insurance kicked in.

So of course, as soon as we got back, I was able to take the new insurance cards and get everything scheduled. Hahahahahaha, yeah right. And monkeys flew out of my butt!

No, there were no cards when we got home. Hell, two weeks later and we STILL don’t have no stinkin’ cards! However. After many calls – calls to UnitedHealth, to the HR woman at my husband’s company, to the insurance broker the company used, the Oncologist’s office, and round and round and round again – FINALLY! I got my Group# and ID# down and straight so that everybody could actually FIND it in whatever byzantine system they used at their offices.

It took days. It felt like the days when we were trying to figure out if the Oncologist and Cancer Center I was using would take any of the new insurance options we were being offered. Before NerdBoat, I’d set up an appointment with the new Oncologist for after NerdBoat, thinking that surely I’d have the insurance cards by then. I ended up having to pay a cash deposit, which I’m ASSURED will be refunded when they finally put it through to the insurance.

Met the Oncologist, who insisted on going through every last detail of the information that the previous Oncologist had already given me. And then he refused to even discuss a chemo schedule with me. Purely out of his concern with my wallet! Afraid that I’d end up having to pay out of pocket and my insurance wouldn’t reimburse me. I was fuming when I left.

The next day I get a phone call from his Nursing Assistant, and set up an appointment for another round of Chemo Teaching. And called in a round of prescriptions for the same drugs I have sitting in my medicine cabinet.

And therein came the next round of phone calls. I called the Pharmacist to give the new insurance information. But the Group and ID #’s were insufficient. Pharmacist needed a whole NEW group of numbers, which can be found on your insurance card. Which I don’t have. So, I get to call HR, and broker, and Insurance company all over again.

I must give praise to Ashly, the woman in Member Services at the Insurance company, who called the Pharmacist FOR me, sat on hold for what felt like 20 minutes, checking back every so often, and finally got the Pharmacist straightened out for me. I sing Hosannas in her honor.

So then everybody lived happily ever after! Hahahaha! How gullible do you think I am? But it does seem like things are coming together. I will sit through ANOTHER  Chemo Teaching session tomorrow, wherein I’ll do my damnedest to hold my tongue. And Radiology called today, and we scheduled my port placement. But I was a little puzzled by the request to come in two hours early. And after we hung up, it hit me. I got the “iodine allergy” stricken from my records with my previous Oncologist. But not with the new one. They’re probably going to try and make me do a two-hour Benadryl drip beforehand.

Shit. Looks like another round of phone calls/emails tomorrow. I am freaking exhausted, and I haven’t even STARTED chemo yet.

Today, I found out that someone else in my husband’s company is also having to expedite their Insurance ID #’s. I hope that, having gone through this once, HR will have a better idea of what needs to happen. FSM have mercy on their souls.

Oh yeah, and for everyone at home keeping score? This is what it’s like with GOOD insurance.

Switching Horses Midstream

Well shit.

I was running along, everything was fine, chemo was planned and appointments made. I was going on the cruise, and life was as good as it could be, all things considered. So you know something had to happen, right?

When my hubby started working at the new company last year, the insurance that was offered was…less…than the previous company’s insurance. And the doctors and dentists we’d been going to? Out of network. So when cancer struck, I had to use a particular hospital and Oncology people. Which was fine. They are great people and I was happy with them. Had all the chemo planned and appointments made, like I said before.

So of course the company decided to change insurance providers. There were four options…and not one of them has that particular hospital and Oncology people covered. And the insurance starts March 1st. Three days before the cruise. With chemo starting the 1st business day after the cruise.

We spent Thursday literally running between offices, trying to find out who and which hospital would be covered under the new insurance. I was hoping against hope that ONE of the four options would result in my not having to cancel my appointments.

Not one of the options did.

Well shit.

So I cancelled  all chemo appointments. I’m clinging the faint idea that they’ll at least be available for other patients now.

I made an appointment with the Primary Care Provider (who is actually the doctor we used to go to), which is “supposed” to be covered by the insurance option we chose. Of course we aren’t actually covered yet, so that’s coming out of our pocket. I explained everything to her, let her check out the scars, explained the expanders, and she gave me an urgent referral to the Oncology department. I went to that department to try and schedule an appointment with the Medical Oncologist, which again will come out of our pocket, because I urgently need to reschedule the chemo appointments. I also need to try and schedule my port placement in the THREE days between when the insurance starts and we leave for the cruise.

So of course, somebody has to review all the records, that I hand-walked over, and make the determination that I do indeed need to schedule the damned chemo appointments. I have to wait, none too patiently I might add.

I’m sitting here. With no port placement scheduled. With no chemo appointments scheduled. With no clue if I’ll be able to replicate what was scheduled. And I still have to gather everything together for the cruise.


UPDATE: Four days later, and not a peep from the Oncology department. So I sucked it up and called. I was able to make an appointment with a Medical Oncologist on 3/13, the day I was SUPPOSED to start chemo. I explained the whole saga, so surely that means I won’t have to explain it again. Right? Yeah, right.

Oh yeah, and the bills from the surgery continue to arrive.

Dazed and Confused

(Edit: this got lost in the draft pile somehow, so there’s two posts today.)

I’ve been absent for a couple of weeks. Sorry. Between appointments, and bills, and Drumpf’s bullshit, I’ve been in a bit of a funk.

Last week had the most drama. It started with a CT scan and Bone Scan in the same day. The appointment started  with a 30 minute argument with, progressively, the Nurse, the Head Nurse, and the Radiologist. The problem, like so many of the problems I’ve had in my career, was terminology.

A very long time ago, I read a small article that said some large portion of adult acne was caused by overuse of iodized salt. As a frequent sufferer of adult acne, I changed from iodized to non-iodized salt, and solved 75% of my problem. I mentioned this “intolerance” to my doctor, wanting to have my records thorough. Well, turns out they have no little checkbox for intolerance, just for allergic and non-allergic. So they marked it down as allergic. And thus the 30 minute heated argument.

When I showed up, they wanted to give me a Benedryl drip for two hours, prior to the tests, to guard against my “allergy”. It took me 30 minutes of heated argument, with 2 different nurses and a radiologist, to get them to let go of that, and even then it was only after agreeing to let the nurse stay in the room while the contrast dye was injected, to ensure that I didn’t have any reaction.

Then there was the argument over where to insert the IV for the contrast dye. I had a double mastectomy, and had 2 sentinel nodes removed. Just 2. I’ve read of women who’ve had upwards of 1-2 dozen nodes removed. And in those cases, yes, there is a high risk of lymphedema in the affected arm. And while there is an easily accessible vein on the affected, left, arm, it’s hell finding one on the right arm. I tried my best to argue that 2 lymph nodes removed is not the same risk as 12-24 nodes removed. Having given in on the 1st argument, they were having none of it for the 2nd argument. However I insisted they not go in the back of the hand, which hurts like hell. So they went in the vein on the side of  the base of the thumb. I have a new place to refuse IVs now. I could NOT find a position in which it didn’t hurt.

Anyway. After the tests, I talked to my Nurse Navigator about the argument, and begged her to get the “iodine allergy” removed from my records.

At the test results review with my Oncologist, the first thing that the Nurse Navigator said was that she had gotten it removed! Yay! Second, my Oncologist said my test results were crystal clear! It could not have gone any better.

With all the SHITE that’s coming out of the White House (I refuse to use his name), it’s been an almost overwhelming week. For the first time, I called my Senator, both of them, and gave my opinion on what I wanted to see happen. I called entire committees to voice my opinions on how they should vote and what they should do about all of the confirmations. I hate phones. I grew up overseas, with no phone. I prefer email or texts to phone calls. And I spent about 2 hours on the phone last week. I spent at least 30 minutes making calls this morning. I expect to spend at least that long again, on at least 2 days this week. I have a residual limp and I can’t stand in one place too long, so I didn’t feel like I could join the protests and marches. I still have co-pays and deductibles and co-insurances to pay for THIS year, not to mention I don’t know what the hell’s going to happen with the insurance turn-over that’s planned at my husband’s workplace. I may well have to pay all those type of fees again when I start chemo in March. So I haven’t felt comfortable donating to all the causes that I’d LIKE to, at least not now. But I CAN put on my big girl panties, suck it up, and make calls. So I have. I’m trying to feel ok with just doing that right now. Wish I could say that I feel ok with it. I don’t. I wish I could feel ok with what’s coming out of the White House. I don’t. I don’t think I ever will.

The Kennedy Package

I met my Medical Oncologist yesterday, to map out the rest of my treatment. He’d already met with the Cancer Board and gotten their recommendations. So he was able to show me what they all thought my path should be.

I interrupted him right there. Remember that JoCo Cruise that I’m gushed about before? (Google it if need be) This year, instead of being a (increasingly large) group on a ship with folks who don’t know who we are, we’ve got the WHOLE ship! And we’re cruising in an entirely different area. We’d already paid for a room. So I asked him if we could push chemo out until we got back from the cruise, because even if we could do chemo around the cruise, you’re not really supposed to drink while in chemo.

Anyone who knows me, knows that if it were any other event, drinking/not drinking would not matter. For 11.75 months out of the year, saying I had one drink a month would be pushing it. It just rarely occurs to me to even have a drink. But this is the cruise. On the cruise, I don’t have to cook or clean, and our daughter has her own room key and can eat whenever she wants. I have absolutely no responsibilities. We all check in every night, and hear what everybody plans each day. But it’s a ship; she’s not going anywhere that we couldn’t eventually catch up with her. So I can drink.

I laughingly explained that we’d already paid for the whole cruise, and on the cruise is the one place I feel comfortable getting the “Kennedy Package“. There isn’t any actual Kennedy Package, but I do get whatever drink package is available. And any time I feel like having a drink, I can get one; and I feel like it a lot more than I ever do when I’m home.

Trying to explain my drinking habits to Doctors/Nurses in the last 5 years has been very problematic.

Anyway, I explained it all, and the Doctor showed me that my cancer growth rate is slow. How slow you ask? During the testing, they examine cells from the tumor to see how many of them are reproducing within a set sample size. Mine was 4%. Four out of 100 tumor cells were showing cell division.

We decided that my cancer is slow growing enough that 3 weeks one way or another wouldn’t change anything. I start chemo two days after we return.

WooHoo! I get to go on my cruise, with my tribe, with no responsibilities, and with as many drinks as I want! I can not state how much I feared not being able to go.


ADDED BONUS: Finally got my sister to go! She expressed interest. We talked to The Home Office for the cruise. And we figured out a way to get her on-board. Even at this late date. It only took five years.


Can't Quit. Won't Quit.

I’m a member of a few breast cancer support groups on FaceBook. Many women answer a question in terms of their faith supporting them, and feeling that prayers helped their healing. I understand that some people need the support of their faith. I don’t begrudge them something that doesn’t work for me. But I try to give concrete answers to questions. How do you deal with the drain tubes, or getting into/out of a bed with steps, or how to know what reconstruction will entail? Well if I’ve got the same situation, I tend to tell them exactly how I dealt with that.

And today, a woman was talking about her recent diagnosis, saying her doctor recommended a lumpectomy, hormone treatment, and radiation, unless an MRI showed differently, and asking if hormone treatment was the best option. Now I’m no doctor; I don’t even play one on TV. She received a lot of answers about a lumpectomy, and hormone treatment. I answered a question she hadn’t even asked. About what happens if that MRI shows something different.

I begged her not to blow by that part, and assume that the initial diagnosis was the final diagnosis. I explained how my current diagnosis was not  even close to what the first one was. The MRI, any biopsies, and even the surgery itself can reveal things not known prior, which will require you and your doctor to reevaluate your diagnosis and treatment plan. It’s like renovating an older house. Every time you open up something, you’re going to find something else that you have to take into consideration. Doesn’t mean the estimate was wrong, just means you have new information now.

She replied that she’s gone into each new test with positive thoughts, and was disappointed that the results had been negative each time, that that this was a ride she hadn’t asked for. Yep, welcome to the crappiest club in the world, where like Groucho Marx said, if they want me to be a member, I don’t want to be a part of it! And yet, here we are. In a club nobody wants to be a part of.

I’m not thrilled with the parts I’ve been through so far. Some of it hurt during, and some afterwards. None of it has been pleasant…except the morphine. Mmmmm…morphine. But even the pleasant part didn’t last long. I’m not at all pleased with these expanders. And the idea of another surgery, months down the road, to get rid of the expanders, is not a pleasant expectation. And chemo, and radiation, and hormone therapies are no bunch of roses either.

But I’m not gonna sit here and wail “Why me?” Why NOT me? I’m not special. Hearing that I had cancer only confirmed my suspicions, it didn’t destroy me. The only thing that would destroy me is hearing that I wouldn’t be around to even see my daughter graduate high school, let alone college, or marriage. And I’m not going to let that happen while there is an ounce of strength in me. I will fight. The doctors tell me where they *think* the final gate it, but that’s only what they think today. Tomorrow is another day.

So I’ll sleep tonight. Tomorrow, I’ll get up and find out where we think the final gate is *today*. And I’ll fight in that direction.

So This Is Plan What, G?

Well fuck.

So I survived surgery. Sorry I forgot to mention that. Two days in the hospital were fun – NOT. The first night, I was still recovering from the anesthesia. I had a morphine clicker. I would fade in and out. Seems that each time I faded in, I remembered the clicker, thought I had been out for a while and click it to keep the morphine up, then fade back out. That went on for what felt like hours. Turns out I faded in and out about every 5 minutes. Clicker got a lot of use, even though it won’t deliver meds faster than about every 10 minutes, it tracks how often you click.

Best part was the infinitely adjustable bed. Perfect for when you can only sleep on your back, and sitting up by yourself hurts like hell.

So two nights…and pre-authorization for only one. I’m sure I’ll get to fight the insurance company over that one.

I just got a call from the Surgical Oncologist. He took two “sentinel nodes” during the surgery, to have tested and see if the cancer has spread. One of the nodes tested positive. He said the Cancer Board met today, and recommended a short course of chemotherapy, as well as the radiation treatment, but not further surgery to get more nodes, so I got that going for me.

So although they usually wait until you’ve healed more from surgery, I get to try and push my Medical Oncologist appointment up, to discuss possible treatments. Yay.

On another note, thank god for body wipes, and for the “rinseless hair shampoo caps”. But today, I got my daughter to help me wash my hair in the sink, with REAL shampoo. I feel almost human again.

Until the next phone call…

This Is The End, My Friends

To my best friends, the 34-G cup twins. In the beginning, this relationship was great. I treated you well, and dressed you up to show you off. Those were happy times. But I have to say, the relationship recently has taken a toxic turn. I don’t think it’s an understatement to say that lately, you’ve been a real pain. You are literally trying to kill me. So, we’re through. I’ve met someone who promised to introduce me to a new pair of twins. Who won’t try to KILL ME. So tomorrow, you and I are parting company.

Tomorrow is surgery day. I’ll be sedated, and my surgeon will perform a bilateral mastectomy. The tumor will be tested to find out the genetic make-up, so that I can be matched with the most effective drugs. The sentinel lymph nodes will be tested to see if the cancer has started to spread.

The last two days have been rather full. I met with the Cancer Care center, and made an appointment with a medical oncologist later. I had my first EKG. I met with the pre-op nurse, and someone in the financial department, and am done with pre-admittance paperwork (yeah right). Someone decided I needed a chest x-ray. And then the radioactive sentinel node injection. Oh yes. The Radioactive Sentinel Node Injection. Actually 4 injections. Around the areola. The needle pricks weren’t bad. But what gets injected stings and burns. I’m pretty sure the room had sound proofing. At least it sure should have. I’m pretty sure I was screaming and cussing like a sailor. Four times. The only “fortunate” thing was that it didn’t take long.

So four years ago, I started a new life. Now I get to start a new life again. I must have been a cat in a previous life. But I’d really prefer not to test how many lives I get.

To all my friends, my SeaMonkey tribe, and my family (there might be so overlap there) who have sent well-wishes and offered help, thank you. I will need each and every one.

I will update when I can, if luck allows.

Queen of Backup Plans

Well, that whooshing sound you just heard? That was Plan A; a neat lumpectomy with immediate reconstruction and (later?) reduction to match.

I had an appointment with the plastic surgeon, wherein we discussed Plan A, and pretty much nothing else.

I had an MRI yesterday that went as well as could be hoped.

After the MRI, I found the message from the Geneticist, saying the results were good news, and that I should call to talk. But all I got was voicemail. Left a message that hasn’t been returned yet.

Then last night, at 6:30, the doc called with the MRI results. The tumor is 7cm, and extends to the nipple, so it’s looking like a complete mastectomy. Oh and there was something in the other breast, so he wants to do biopsy on that side too. And I need to talk to the plastic surgeon again, now that we have a more accurate picture.

But my husband got back from Japan, so I have that going for me.

The Big C

NOTE: This contains some descriptions of a slightly explicit nature. YOU’VE BEEN WARNED!

I was fine until this Tuesday. That’s when it changed. Or at least my view of things did. They don’t usually give this kind of news over the phone. They want you to make an appointment, and come in, so someone can be there to console you. But he didn’t. He asked me how I was doing, and I told him that would depend on the news he had. He didn’t pussy-foot around. “It’s cancer.” And just like that, my world changed. Again. If you know anything about me, you know about the stroke 4 years ago. If you don’t, well, that story’s here somewhere. Go ahead and look, I’ll wait. I’m beginning to think that California doesn’t like me.

So yeah, the lump I noticed a year and a half ago, which they mammogrammed and kind of dismissed as not a problem, just keep an eye on it, and if there are any changes, come back in, well there were other changes that showed up. The nipple inverted, and started having sporadic needle-like pains. So I went in. (We’ll ignore the fact that my husband got a new job, with insurance that’s not quite up to what we used to.)

So a bunch of questions later, I was directed to Radiology, for a mammogram and ultrasound. That led to an immediate recommendation for a biopsy. The doctor I was referred to for the biopsy had a bunch more questions, and because of the stroke, recommended I stay on blood thinners, something they usually have the patient stay off of for 3 days prior to the biopsy.

Do you know what post-biopsy looks like when you’re on blood thinners? There wasn’t much pain, but it looks like I’ve been kicked by a mule! Kind of like my arms did after the stroke, when the IV blew while trying to get a cat-scan.

The biopsy itself only required about a quarter inch incision. He spread a topical anesthetic, and then injected a numbing agent all around the lump. I felt just a couple of jabs before the anesthetic started working. When he inserted the core needle, I didn’t feel it. When he started taking samples, mostly I felt the cold air blasting into my armpit, but there were a couple of odd sucking sensations. Other than that, I felt nothing. But from the bruising, you’d think the doctor has slashed a few minor arteries. He sat there for what felt like 10 minutes afterwards, with his hand on my boob, just holding the incision closed and keeping pressure on it. Then he taped it closed, then put a bunch of gauze on it, and taped the whole thing up, tightly, to keep pressure on it. And ye gods, the blood all over the gown and table.

That quarter inch incision took 48 hours to stop bleeding and close up. When I took the outermost tape off that evening, it apparently ripped some skin. I developed a few blisters, and a raw spot. But incision itself was definitely still bleeding, and gaped open a bit, so I taped it shut, and gauzed and taped it like he’d done, to keep pressure on it. And again the new morning. Then just a tightly applied band-aid that night. And another the next morning. That evening, there was finally no bleeding, and the incision was closed. But of course the spectacular bruising.

That was last Friday. He called Tuesday night with the news.

I’ve been sewing a lot, to keep from thinking about it. My daughter and her friend have some cute hoodies now.


Today, we met to talk about The Plan. The tumor is slow growing, but is 3-4 centimeters. So that throws me into Stage 2, maybe Stage 3. Since it’s slow growing, he doesn’t think chemo will be appropriate, since chemo targets fast growing cells. But it’s definitely a hormone receptive tumor, so hormone suppression is in my future. Hello menopause, what took you so long? He thinks a lumpectomy, with concurrent reconstructive/reduction surgery, is an appropriate path as this point. Possibly radiation afterwards. Subject to change. I’m meeting with a genetic counselor Tuesday, to see what kind of risk that all brings to the table. I’m supposed to hear about an appointment to get an MRI, to see if there’s anything more there that the mammogram didn’t pick up. I’m also supposed to meet with the Reconstructive Surgeon. Any one of these things could indicate a more aggressive approach. And even when we get right down to the surgery, they could find something that would also indicate a more aggressive approach. So I’ve got what feels like a Plan A, Plan B, Plan C, and probably a Plan D. I’ve always said I was the Queen of Plan Bs, but this feels a little ridiculous.

Who knows? Maybe everything will go according to Plan A. Maybe at the end of all this, I’ll end up not having to go to specialty bra stores, and pay less than $80 on a bra. I’m trying to remember when that last happened. When I could go to places like Victoria’s Secret, and buy lacey little things with no real support. I’m trying, but honestly, I think it was sometime in the late 80’s/early 90’s.

Oh, and he kept referring to me as “young”, which tickled the hell out of me.

But yeah, I’ve been on edge since Tuesday. But today eased the knot in my chest. And so the journey begins. I’ve joined the Cancer Club. Let me tell you, it’s a sucky club.