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Cycle 2: The Further Adventures

Started Cycle 2 on the 11th.

The day after the infusion, I no longer passed the hair-pull test. I’d took a pinch of hair and pulled, and some of it actually came out. Baldness is eminent.

The infusion nurses and I had had a conversation about the after effects of the Neulasta shot. Many women suggest taking Claritin around the Neulasta shot to ward off the long bone pain. It’s always Claritin. But I asked my nurses if Claritin would interfere with the Alegra I already take. They suggested just taking my Alegra in the morning, since it’s an antihistamine as well. But I looked carefully at the ingredients, and the active ingredients are totally different. So I just switched to taking the Claritin in the morning, and no Alegra at all. It seems to work well. I’ve only had a few long-bone aches. Didn’t last long.

So I have trimmed the bangs on my long-haired rainbow cosplay wig. I still need to work on the long curls. I think conditioning, and combing, then forming and pinning the curls, and rinsing out the conditioner might work. We’ll have to see.

When you start each cycle, you’re supposed to make appointments for a blood draw at the end of the cycle. They do labs, and then you’re supposed to see the doctor to make sure you’re well enough to do the next cycle. I don’t know what happened, but somehow I got an appointment on the 24th for the blood draw, an appointment on the 25th to start the infusion, and an appointment LATER IN THE DAY with the doctor, for approval to start the next infusion…which I was supposed to have started earlier that day. I pointed the out to the scheduling desk, and they said they’d check into it and call me. Finally got it straightened out. But I think it’s a little inappropriate to expect the woman with chemo-brain to notice and get it straightened out. But what do I know. I’m just a woman with cancer.

So, sorry if this rambles, or ends on a down note. It’s not meant to, but you know, chemo-brain. I’m really thankful for all the friends who IM me to ask how I am, or if there’s anything I need. It’s nice to feel the love.

Cycle 1: Day 2 – A Running Log of Symptoms

(Edit:  I’m not documenting every day. So no daily update of symptoms. Nobody needs that. But I will try to post at the beginning of  each cycle.)

Today I get to have a shot which may 1: give me lots of energy for a few day, 2: make me even more emotional, and 3: make me irrationally irritated.

Yay. I’ve already warned my family of this. That it’s not them, hell it’s not even me; it’s the drugs.

I’ve figured out I need to carry the anti-nausea drugs around with me. Looks like I’ll have to start carrying a purse again.

Managed to hit the Orthodontist with the EOB from the insurance, stop and get a pair of sunglasses to replace the ones I left on Nerdboat, stop at Starbucks and get a frappuccino to replace the calories I haven’t been eating.

And now the heartburn, along with a stoned feeling, without anything that would cause that.

Oh yeah, very stoned feeling. Just not from any mj.

Dinner was ok, but got really sleepy afterwards. Managed to hold on till 8:45, and headed back to bed. Noticed I was very flushed, but no fever.

I think I slept for about 30 minutes, but my left leg got very twitchy. That’s not the one I normally have problems with. Ended up taking a lorazepam and slept like the dead till about 9 this morning.

 

Cycle 1, Day 1: Crickett’s Big Adventure

Started chemo today. The actual infusion was a lot shorter than they’d led me to believe. But of course, they want to leave lots of time for Justin. You know, just in case the port had developed a clot that had to be dissolved first, just in case you have a reaction, that sort of thing. I thought it was going to be somewhere between 5-8 hours. It took 2.

The biggest issue *I* had was that the area around the port was still bruised and tender. Apparently it’s a little deeper than usual, too. My nurse took two attempts to connect correctly. Not living hell, but definitely painful. As was the disconnect. Hopefully it will be easier when the bruising heals.

I drove home fine, but quickly needed a nap. An hour later I was jerked out of bed by the need to take one of the nausea pills. Only pushed it down a little, which was better than nothing.

But there was still nausea. Not the “I’m going to throw up in the next few minutes” type, but rather the “I’m feeling a little green” type where you are producing a little too much saliva and you’re very conscious of the saliva glands under the tongue. So after a couple of hours I took a lorazepam as well.

Managed to get down some chicken soup, which helped a little. As did the tums. Then turned in early. The sleep was just glorious.

Oh Yeah, I Was Here To Drain The Swamp…

Ok, I’m waffling on the edge of being terrified.

First, the port placement, first set of blood draws, and first chemo appt have been set up. Once they had the correct insurance numbers, they wasted no time in heaping appointment after appointment on me. Surgery didn’t faze me at all. I went to sleep, and 9 hours later woke up with weird shaped boobs and scars for nipples. But the approach of chemo has me a little weirded out. There’s a list of symptoms that I may or may not get. And an even larger list of medications they promise will help with those symptoms. I don’t even want to the list of symptoms those medications may give me…or the list of medications for those symptoms. I’m just going to assume it’s an infinity mirror of symptoms and medications.

Second, the first insurance company sent us a refund check, but doesn’t explain what it’s for. I don’t believe that I have all the bills for up to February 28th. I don’t see where we’ve met the deductible (for that insurance company) yet. So a refund check feels a little fishy. I guess I should just cash it, and pay off some of the cancer debt. Probably just to turn around and accumulate more cancer debt. The new insurance is supposed to be better. I’m living on hope where that’s concerned.

Third, my daughter has braces. We worked out all the arrangements with the Orthodontist and the insurance company when that process started. Seems that the new dental insurance has a much lower cap, and now they want an Explanation of Benefits from the old dental insurance in order to figure out…something. I’m not clear on what. Why does the new insurance need to know what the old insurance has already paid, in order to figure out what THEY are going to pay? So I have to dig that paperwork up. All I really hear is cha-ching!

So I guess all in all, it’s just business as normal around here.Dazed and confused.

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.

Yay.

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.