Mother of the Year

She is not me.

Something to Think About.

That stupid cancer meme is going around on Facebook again. When I say "stupid cancer meme" I mean the meme itself is stupid, not "stupid cancer" like it says (although I am not at all opposed to calling cancer stupid).

If you haven't seen it, it goes something like this:

Stupid cancer. We all want a new car, a new phone. A person who has cancer only wants one thing... to survive. I know that a lot of you "who think you're too cool" probably won't re-post this. But a very little amount of my friends will. Put this on your wall in honor of someone who died of cancer, survived, or who is fighting against it now.

I have a lot to say about this stupid little bit. At first glance it looks fine, right? I mean, no one likes cancer, right?

I have disliked this piece ever since the first time I saw it. For the record, I dislike every one of these things that try to guilt you into re-posting it. For that reason I hardly ever re-post anything at all, and then only if it doesn't have a guilt trip attached to it. So it's really not that I "think I'm too cool". Insert eyeroll here.

But I've hated this one since the first time I saw it, which happens to be way before my own diagnosis. Can you figure out why? Really, before I go on, I would like you to try. Read it over, and let me know what you think. If you think I'm wrong, that's OK. Let me hear it.

The specialist visit

The visit went great! I really liked the doctor. I got a lot of great information to help me make my decisions, and she talked to me like a human being (not that Dr. M doesn't! But I still remember Dad's doctor...jerk!). If I get the surgery, I want her to do it. She said my regular gyn. could do it, but given that he thinks it's a bad idea I just don't think I would want to. Plus she is a specialist.

No decisions yet. Lots of info still to get. But I think the hysterectomy is definitely a go. I am at high risk for ovarian cancer due to Mom's having it AND my BC. And if I get my ovaries chopped out -- no tamoxifen!! Yay. She said the stuff I would take in that case has far fewer side effects.

I am very satisfied with this visit and look forward to getting on with it. :)

Specialist

Today I'm finally going to see the Oncologist-gynecologist. I'm hoping to get enough information to be able to make some decisions regarding surgery. I also want more info on the drug they want me to take starting when chemo is over, for 5 year - tamoxifen. The more I learn about this drug, the more I don't want to take it! Articles like this one don't help any. Don't get me wrong - I don't want you guys to stop sending me articles. None of this is news to me. It just really makes my decisions harder - which is probably a good thing. I want to make informed choices. I think my doctor has already figured out that I'm not going to just sit back and do whatever they say!

Anyway - I'll post again after I get back.

Greasy Hair

My hair is growing back. I wasn't sure at first - but now it's obvious. And the best part is, it's not all gray! Whoop!!!

Of course they tell me it may fall out again from this new chemo. I think it's been enough time, but I'm not going to worry about it.

I was really sure it was coming back tonight when I went to rub lotion into it. I've been putting a coconut oil lotion on my head for the past couple of months. Coconut oil is supposed to be really good for the hair and scalp. It feels so cool and good - I was actually thinking the other night that I would miss doing that when my hair was back!

But tonight after rubbing it in, for the first time, I am left with - a head full of greasy hair! Usually it all rubs into my scalp and you can't even tell it was there in what little hair there is.

But tonight it's all greasy. Even if it ends up falling out again, that makes me smile.

4 down. 8 to go.

I wonder what would happen if I just didn't go back.

Disclaimer

I finally decided to "go public" with this blog. So I want to make the disclaimer that this blog is full of TMI, rants, etc and it's possible that something might offend someone. Please keep in mind that something I write in the heat of an emotion is influenced by several things - chemo, pain pills, or just plain momentary emotion! If there is something you think is about you, it probably isn't. If it is, unless I spoke to you about it specifically it's just a fleeting emotional outburst that I let out and got over. I don't want to edit or soften anything I write here because it's where I "get real" about all of this, so to speak. So with that said - read on - and feel free to comment if you like! :)

Chemobrain

Chemobrain has been the worst part of this I think. My mind is foggy all the time (though better now than when I was on adriamycin, WAY better!!), I say the wrong word, and I forget things. Sometimes important things. The past week I have messed up a couple of really important things for my kids. I know life goes on and it's not such a big deal and they forgive me and all that. But I am their mother and they count on me and I hate that they can't. I hate that my daughter cried herself to sleep over what I forgot for her. Luckily her issue was solved by a late night trip to Wal-Mart, who had the product she had been reminding me every day for 2 weeks to pick up. I shouldn't be so hard on myself but then again when I am reminded EVERY DAY for 2 weeks and I still forget, it's upsetting. I write things down but then I forget to look at the list, or forget to bring it with me, so what good is it?

Failing my kids is a really big deal to me. It hurts them even if it's not really a huge deal in the long run. Let me stress that THEY are not holding it against me - I am. It's just not the mom I want to be, even though I know I should not beat myself up and that it won't last forever.

Stupid things like saying the wrong word is just plain embarrassing. Also misspelling words and bad grammar. I admit I am not even trying to use proper grammar in this post. You can see how bad it is! I read over my old entries last night and was noticing all the errors. The bad part is, I took extra time to proofread! Ouch. Maybe most people wouldn't care, but I do care.

BILLS!

I've been steadily getting bills now, some that date from the beginning of all this. I have no idea why they wait so long to send bills, then they get really irate and say it's 90 days past due when you haven't seen a bill before this! As far as I knew they may have been paid already since I didn't hear anything! WHile we were on vacation in July I had a message on my cell from the surgeon's office, for example. She said my bill is past due and I need to call right away to arrange payment. I was surprised since I hadn't seen a bill from them at all. I called back the next day and the woman who answered was apologetic. She said the woman was not supposed to call (personally, I thought she sounded a bit threatening) but just go through the bills, which HAD NOT been sent. They would be filed with insurance and I would be notified if there was a balance. LOL, I got the impression that "Summer" was no longer with them. Anyway now it's September and I still have not gotten a bill from them.

I did finally go through all of my EOBs that have been piling up. I had been sticking them in a box. Now I used my 3 hole punch on them and put them in date order in a binder. The EOBs alone are over an inch thick already! I did the same with all bills, whether paid or unpaid.

When I added everything up, it totals almost $1000 OVER my max out-of-pocket. So before I start paying everyone, I put a call in to my insurance co to see what's up with that. I am waiting to hear back from them - hopefully today.

I used to be a CSR for the health insurance agent and I was the one who would call the companies on behalf of the insured. I dealt with health insurance issues on a daily basis and knew how each kind of policy works. What we have is a new one on me and I am still confused by how it works, although I am getting a better understanding. What I do know is that co-pay doesn't go against the max out-of-pocket (Whoa, I hope the PT doesn't need a $20 copay every visit!!!), and that once I meet my max I should not have to pay anything BUT a copay (not everything requires a copay). I am still not sure exactly what DOES require a copay but they are supposed to collect it at the time of visit and it isn't more than $20, so I know that is not part of this mixup.

It's appalling to me to see the amount that is "written off" for those who have insurance. For instance, each chemo treatment is around $3000. All but $800 is written off. If I hadn't met my max I would then pay 20% of that. Yet the office says they don't take cash patients. Wouldn't it be in their best interest, as long as the patient HAS the cash? But then I've heard that uninsured patients can usually get the provider to accept what insurance would pay. Not sure if that is true. Why not just make that the charge in the first place if that's what they'll accept?

Anyway, I set aside money to pay all this but I am not going to pay more than I have to! So sorry if you haven't gotten your money yet but if you'd sent out the bill when the service was provided, you would have had it months ago!

Physical therapy Evaluation

I am so excited about PT! I was evaluated today. I thought I was just going in for some help building back up. But they had an extensive questionnaire about any pain I feel at any time. I told them I had pain in both shoulders and my right hip.

So she was moving and poking and prodding and asking questions. Because the hip pain hadn't happened in awhile (probably because I have become so sedentary!) I completely forgot that it started after my 3 month pregnancy bedrest in '01, and was so bad that a 30 minute Wal-Mart trip would force me to recover for the rest of the day! It was hurting a little bit this morning or I would never have told her about it at all.

What she told me is that my left hip is actually higher up than the right one! Also, my right leg is slightly longer than the left (she would have expected it to be the other way around). My right hip is tilted out of place, slightly forward. She did some very gentle exercises to move it back into place, and it worked. We'll do those for awhile and eventually it will stay in place. I didn't feel much different walking afterward, but my hip no longer hurt!

Of course she has no idea what caused it. I had hip dysplasia as an infant but was released from medical checkups at age 13. It's possible the triplet pregnancy caused it. I had asked the doctor about it back then and was told it was "normal" - I gained a lot of weight and was on complete bed rest for 3 months. I asked about it sometime after and was told my body was recovering from the bed rest. I told the lady today that I have felt like I was still recovering from bedrest, in many ways, 10 years later!

So I should have pushed for more answers! I can't believe my legs have been different lengths all this time and nobody noticed?? How did *I* not notice??

It's funny, my Grandmother always walked slightly lopsided. More so as she got older. I wonder if she had the same problem with her legs? I wish she was here to ask. I would also love to ask my Mom more about the hip problem I had as an infant. I had to wear a cast on both legs, with a bar between to hold my legs apart, for a year I think. Because of that it took forever for me to learn to walk. Instead I learned to scoot quite well. I had to go in for yearly checkups until I was 13.

I am very excited to continue the PT. we're going to start with 3 days a week and work on the shoulders too which she believes is a posture issue.

Abraxane

The total treatment time today was less than 2.5 hours. I still needed Benadryl. I'm not sure why. I had read that it isn't needed with the Abraxane and she said he was giving it "just in case". Then she said they give it with the Herceptin anyway. There was also an anti-nausea drug. SO I need to ask the doctor if these are really necessary.

Of course I got really loopy from the Benadryl. I could not sleep because I had restless legs. I came home and took a nap and feel really drugged. I didn't feel like this after the Taxol; I was able to function and even go to meetings on Tuesday night. I definitely wouldn't be able to do anything like that tonight, and it's from being super groggy.

I won't have to wait till 1:00 from now on. They had the drug at the Covington office and didn't get it to this office in time. From now on they will have it here and I can go first thing in the morning again. Maybe I seem abnormally groggy right now just because I got it later in the day? If that's the case I should feel fine in a couple of hours.

Questions

Yes, I'm awake again at 3:30 am. Not steroids this time - night sweats. Hooray for forced fake menopause!!!

I start the new chemo in the morning. Or -- it was supposed to be in the morning. They called yesterday and said the med has to come from Covington and it won't be there until 1:00. I asked "how long will it take? I mean actual time, from walking in to walking out". She said 2.5 hours. (which, IME, probably means closer to 4!) I told her I need to be home at 3:30 for the kids. So she said ok, come in at 11:00 and we'll do the Herceptin and premeds first so at 1:00 it won't take as long. OK, good deal, let's do that.

Now at 3:30 am I am thinking: I thought the abraxane doesn't require premeds? If I find out I'm getting steroids I am going to be PISSED! Then again, he did say I would need a test dose first just in case I was reacting to the actual drug and not the carrier. So maybe it's just this one time? I Googled it and found where some say they are tired the day after treatment if they don't take steroids. I am willing to try it without and see how it goes. Like I said before, not much could possibly be worse than how I felt ON the steroids.

The other question is: Will the med not be there till 1:00 every week? Because I don't really like that either. I guess I can tolerate it if we can start the herceptin first, but still, I like getting it over with in the morning. I really enjoyed going in at 8:30 last week and being out by noon. And why can't they get the med in on Monday afternoon and save it? Will it spoil or something? Confused here. I am getting my way once again and then getting confused because it isn't going as I had planned. Troublemaker! That joke is getting a bit old, by the way. Are there really so few other patients that want some say, or have questions about their treatments?

******

Google confirms that once you mix up the abraxane with the carrier, it only lasts 8 hours. So I guess it's afternoon treatments from now on, but I will still ask if they can't get it any sooner than 1:00. Why Covington? Why not somewhere here in Slidell? Although it should only take 30 min after that so as long as they get it there when they say they will - a BIG IF in my opinion (we shall see), it would be OK.

I am also now wondering about this "human albumin". Can it cause disease? Thinking of the AIDS etc that was caused by blood transfusions before proper testing was in place. I am a little bit leery, although surely it's better than the castor oil and alcohol used with the Taxol. And hasn't it been years and years since disease was proven to have spread that way?

Ugh. I just SO HATE having myself voluntarily injected with toxic crap. Usually I have not even been reading the inserts or information, because I have to do this so it's probably just best not to know!

ABRAXANE

Active Ingredients

PACLITAXEL

Inctive Ingredients

Albumin, Human

6.3 Shelf life

Unopened vials: 3 years Stability of reconstituted suspension in the vial: After first reconstitution, the suspension should be filled into an infusion bag immediately. However, chemical and physical in use stability has been demonstrated for 8 hours at 2°C-8°C in the original carton, and protected from bright light. Alternative light-protection may be used in the clean room. Stability of the reconstituted suspension in the infusion bag: After reconstitution, the reconstituted suspension in the infusion bag should be used immediately. However chemical and physical in use stability has been demonstrated for 8 hours not above 25°C.

TAXOL

Active Ingredients

PACLITAXEL

Inctive Ingredients

polyoxyethylated castor oil,alcohol

Stupid Steroids

I am SO SO happy I won't need steroids anymore. I sure hope they don't find some reason to give them. Here's why.

It is 2:15 AM on Friday night. On Tuesday I had a double dose of steroids because of my reaction. Tuesday night I did not sleep at all

Wednesday I napped for one hour in the morning

Wednesday night I got 3 hours of sleep

Thursday - no nap, had trouble sleeping at night, ended up with about 5 hours total

Friday took a one hour nap

Friday night -- well, like I said, it's 2:15 AM!

The thing is it's NOT just insomnia. I am wide awake. It may as well be daytime. I have just finished 2 loads of laundry and a sink full of dishes.

I did try lying down, just in case it helped. I was tossing and turning so much I got up rather than wake John.

I know it's not healthy to not sleep. It makes me wonder what is so freaking important that I had to have the steroids in the first place? I would rather be sick for a couple of days. I guess I will continue in my role as official troublemaker and demand the reason if they want to give me any more.

Physical therapy

At the doctor yesterday I asked about exercise. Before I was diagnosed I had been starting to get back into decent shape (which is probably partially responsible for how well I've taken the treatment so far). After surgery I just let it go again. Now if I walk across the house it gets my heart rate up. One of the worries of chemo is damage to the heart, and I get tested regularly to be sure mine is up to the task, so I was really worried about it.

So the good news is I CAN exercise - in fact he set me up for physical therapy so I can ease into it properly. I'm excited! I have an appointment for next Wednesday. The only bummer is that I can't swim, which is my favorite exercise (and our club has an awesome indoor saltwater pool). John was concerned about germs in a public pool, and the doctor agreed. So the pool is out, but only till chemo is over, which isn't too much longer - hooray!

This weekend we're going up to visit our college son. We do this every September - it's Parents' Weekend and we love to go to the game and sit with the band. I was afraid I wouldn't get to go this year. I'm so happy that I am taking the chemo well and can actually DO things!

Abraxane

Abraxane - that's the one I looked up. It has no side effects, requires no pre-meds (NO STEROIDS!!!!!) and has a much lower infusion time. So where do I sign up?? LOL!

I mentioned it to my doctor today and we're going to go with it! He says it's actually the same drug as Taxol. The allergic reaction is due to the carrier for the drug. it doesn't dissolve in water so they have to use chemicals. The Abraxane carrier is much easier on the patient. Unfortunately it costs more for whatever reason. Insurance won't pay for it unless there is some reason to, such as having a reaction. So, I'm in! I'm actually excited. There is a tiny chance I reacted to the actual drug so they have to give a test dose. But no one ever reacts to the drug so I'm hopeful. And we don't have to start over with 12 weeks - will do 9 or 10 since I had 2 weeks of Taxol. So I'm still pretty close to the original schedule of being DONE by November.

He's referring me to an oncologist gynecologist. I am really torn on having surgery. Dr. C (regular gyn.) is against it. I am for it. Dr. Mc is for it. The other one will probably be for it too. I need to do more research.

Bad reaction

Today I had an allergic reaction to the Taxol. It's not uncommon; in fact, they start you out with a dose of Benadryl. Then you sleep through the rest of it, LOL! I have had 2 doses of it before today. First time, no reaction. Last week I did react but they thought it was from my cold, said it didn't "fit" the normal reaction. They gave me more Benadryl, slowed down the pump and it was fine. Today it happened exactly the same only worse. As soon as the pump started first I saw lots of spots before my eyes like things swimming. Then my face POOF got really hot. Then it was hard to breathe. All within seconds. I didn't have a bell on my table to I asked the lady next to me to ring her bell. She was confused of course but did ring it and meanwhile I shouted for the nurse. She ran right over with a bag of benadryl and unhooked the Taxol. The doctor and several other nurses ran over and the doctor was telling them to grab an epipen and stuff. They didn't have to use that though because the Benadryl did the trick. They told me my face was beet red. My BP went way up to 188 over whatever. Within a couple of minutes it was back to normal though. It got better almost as fast as it got worse. But let me tell you it was SCARY!!! And I felt really sorry for the new patient next to us who had to watch it! She is freaked out enough just starting out. And we had been telling her how much easier it gets.

So now, I can't take any more taxol. it's too dangerous. There are other options and I have a Dr. appt on Thursday to discuss. The one he mentioned has more side effects. I was really excited to not have any!!

But I got home and started researching. I don't get on the message boards for this much because it's depressing to me. But they are a good source of info. So I typed "alternative to Taxol" in the search box and found one to ask about. They said there are NO side effects, it requires NO pre-meds (for Taxol I am on steroids, Benadryl, and Pepcid which take over an hour before I can start the chemo) and takes only 30 minutes to drip weekly! So I am thinking WHY would they not START me on something so magical?? Later someone said it is newer (though not NEW) and costs more so insurance doesn't like people to start on it, in fact won't pay for it, but that if you had a reaction to something else they will usually approve it. So I am definitely going to ask about it. I can't remember the name; I saved the page on my other computer, so I will post it here when I can get it.

So this week I essentially had LOTS of Benadryl, LOTS of steroids and a dose of Herceptin. And a scary time! I sure hope that doesn't happen again.

I was also talking to this new patient about the surgeries. Her son is an OB-GYN and he insisted she should get the complete hysterectomy, plus a double mastectomy even though it was only in one. So she did, and there was supposedly nothing in the other breast, but they tested it anyway and it WAS there, just not visible to the other tests yet! So now I am SURE I want to do the other one. Might as well, since they have to match it in reconstruction anyway. I told her my GYN was against the hysterectomy and she asked who I use? It's the same one she uses and he told her the same thing! I really think he is just old school (he is older). Back in those days they didn't think removing it would prevent it, it would just show up elsewhere. Now, they don't want you running around removing body parts for no reason but in my case it is definitely indicated. The oncologist said he would refer me to a GYN-oncologist. this lady saw him too and says he is great. So she had all her surgeries done before starting chemo. I am now wondering if I should put the rest of chemo on hold and do the surgeries first? I'll ask that on Thursday. Especially if there is a chance it's in the other breast already.

Cold and Flu Season

I think it's going to be a long one. I'm still trying to recover from the cold I caught 2 weeks ago. It turned into a sinus infection, which luckily I realized in time to get meds before the holiday weekend/Tropical storm. I am on Day 3 of the 5 day Z-pac and not feeling as much better as I should, so I may have to get more meds. Grr. I hate taking antibiotics because they always cause yeast issues. This time I am keeping myself well dosed on probiotics and haven't had any issues there so far.

This morning in church it seemed like all I could hear was other people coughing and hacking. Even the pastor had a cold, I could hear it in her voice. I tried not to hug people but they are all so friendly. I may have to stop going for now, if a simple COLD can wreak this kind of havoc on me while my white count is awesome! I'm really torn, because I need to get out and do stuff!

The whole family is going to have to get a flu shot which I also hate. I'm not sure if I can get one while on chemo. I can't remember what they said. Ugh, I don't want to! *pout and stamp feet*

Other than that - still no side effects. I wasn't sure at first, since they said side effects could include flu-like symptoms. So maybe I actually have had some and just don't know it. However, I feel that if I don't know I am having them, they don't count!

Week 3 coming up.