Second treatment

I had the second treatment today. Getting it is no problem at all. it's really nice in the chemo room. They have a Kentwood dispenser. coffee and snacks, although the snacks are things like chips, packaged muffins and peanut butter crackers, etc. All stuff I don't like to eat because of the junk in it. Ironic that I spent so many years avoiding that junk, I ed up with cancer and they feed it to us there?? I will bring my own next time. I just didn't think of it today. I can brig anything I want. I joked that they need a pedicurist and makeup artist there to make it a complete spa day. All the patients seemed to like the idea! ;-)

Sometimes the patients chitchat a little bit. Today there was a woman I talked to. She recognized me from the ball park from a few years ago. We all share our stories. it reminds me of right after Katrina. I've never really known people to listen to the stories of others so well.

Most of the people seem to come from miles around. I saw the same thing when taking Dad in for radiation years ago. We are really blessed to have this cancer center nearby. It's literally 5 minutes from my house! I's not just the doctors, but the facilities to have the procedures done. Lots of people go to MD Anderson etc for their diagnosis and the doctors here work with them in doing the treatment. The woman today was one of those. She had been told at Ocshner to go home and die, there was no hope for her. But she went to MD Anderson and was given hope and a plan. A doctor here is implementing the plan so that she doesn't have to go to Houston as often. She is already much better!

I've learned that every type of cancer is different and every person's is also different. The "cocktail" of chemo can vary even among the same diagnosis. Many of the new drugs don't cause hair loss. Again I am just the lucky one! LOL! :)

So this afternoon I got home and ate. I always forget to eat before I go, then it covers lunchtime and I was lightheaded when I got home. I ate "normal" food. By dinner I was a little nauseated so I waited and ate later. I took a phenergan and it seemed to help. I got my other prescription in for Kytril. It's supposed to work better, but the insert says to not take if another drug you take can affect your heart beat. I need to double check if it's OK with the Armour Thyroid even though they know I am on that. Too much of that can cause rapid heartbeat; in fact that's probably part of why I was in for tests in November (I cut my dose back after that). I can get by on the phenergan if need be. The kytril blocks the brain impulses that tell me I am nauseous so it works better.

I was able to eat normal dinner food later. Now I can't sleep. The nausea is back so I took another pill. Also, I have Restless Leg Syndrome (RLS) and it's driving me batty tonight!! It's only in the right leg which happens to be the bottom leg, which is worse. So I am completely exhausted and want only to sleep, have been trying since 10:00 (and apparently succeeded for a bit) but can't. RLS only happens at night. I will get up in a few minutes and do some laundry or something, and nap tomorrow I guess. I'm starting to get the dry mouth I remember so well from last time. I have a bottle of liquid called "Magic mouthwash" that I'm supposed to use to prevent mouth sores. I didn't use it last time and I don't remember a lot of mouth issues. I tend to chew on my inner cheek anyway. I will give this stuff a try but i HATE using stuff like that especially if it tastes nasty! Another irony is that I am someone who hates taking any kind of medicine! I take the thyroid and occasional advil. Nothing else for years!! So of course I am the one having to make the choice to infuse my body with all this poison! Really trying to overcome that image and think of it as a lifesaver instead!!

I have to go in for the neulasta shot tomorrow, too. That is what really knocked me for a loop last time.

I was able to clear up the Diplomat Pharmacy thing. The patient advocate had arranged it when I asked her to see about financial aid. I told her to tell them no thank you. I do not want to be responsible to bring it in and there is still the issue that they may change my doses etc. from time to time. I am still a little bit troubled about the whole thing. I don't think this was mentioned when we discussed finances. It seems like she should have told me this was an option and explained how it works and told me they would call me, rather than just have them call out of the blue. It's possible she did and I don't remember - but I don't think so. Also I am positive the first caller said i HAVE to use this and I knew even then, and has been confirmed, that I DO NOT.

I first mentioned it to the nurse this morning since I wasn't sure who to talk to. They were as clueless as I was until I said "Diplomat Pharmacy". Then they said that was "Michelle's thing", exchanged looks and whispers with each other. I heard one say they think it's a conflict of interest. So I don't know how she is involved. They said they call the people who bring their own meds, "brown baggers". Well, I do wish they wouldn't mock the people who do use it if it saves them money. I want to give them the benefit of the doubt and say I don't think they MEAN to mock them, just can't think of another word. But they did agree there are issues with it and especially if the doctor makes a change or it hasn't been stored properly.

I just don't want to have to worry about it, and I am at my yearly out of pocket anyway so it won't save me any money. I am also very turned off by the way it was handled and I guess I will never know who exactly called me the first time.

I am reminded of the importance of either having someone with me at my visits, and/or writing everything down. I don't know if the "chemofog" will get worse but I am havig problems remembering things and I will often say the wrong word (you may find confusing things written here for example. My brain will think one thing and type another!) Yesterday I wrote out my questions and concerns and wrote down his answers. So if Michelle DID discuss this with me, I would have it in writing. I also confess I didn't read any of the million pamphlets she sent home with me. Maybe I should. Maybe there is something in there.

Yesterday they called again and I explained to the man what I was thinking. He was very understanding and said he would put my order on hold until/unless *I* personally called back to approve it. So I am no longer labeling them as pushy either. I think this was a big misunderstanding and I am not going to assume any negative intent by anyone! Michelle called them and put a stop to it. So it's taken care of and they should not call me again. :-)

Weirdness

About a week ago I got a call from someone - I assumed it was my health insurance company (but now, I'm not so sure). They said I have to use the home delivery pharmacy for my long-term medicine and they would set that up for me. I was confused because I did get a couple of prescriptions, but neither of them would I consider "long-term". I do need them for the duration of my treatment but they are on an as-needed basis - in fact I have not even picked them up from the pharmacy yet - I won't need them till right after the next treatment, if even then!

So I asked which meds they were talking about and they shot off a bunch of names I didn't recognize. I told them I don't even remember what is waiting for me at the drugstore but that they aren't "long'term" anyway so basically, no thank you. Again they insisted that I HAVE to use their service. Again I said that I have no idea what they are talking about.

They would not let me go, though. Finally I recognized one of the names as a shot I have to go into the doctor's office to get on the day after the chemo. This med stimulates the bone marrow to produce white blood cells since they have all just been killed off by the chemo.

I don't know about you, but I see a difference between the typical "long term" med and a shot that I have to receive by a nurse at the doctor's office, a total of 8 times, 3 weeks apart.

I mean to me, "long term" would be my thyroid medication that I must take daily for the rest of my life. Which, by the way, they have never offered to "home deliver" to me! Oh, now I remember - I do have the choice to get it that way, but I DON'T HAVE TO.

I digress...

After going back and forth on this for quite some time I finally told them there is no way I am authorizing HOME delivery of meds I get at the doctor's OFFICE and don't even know the names of! They still would not let it drop! Finally I said they should call the doctor himself. I gave them his name and hung up, and promptly forgot all about it.

Then about a week later, on Friday morning I get another call. This one says they are from "Diplomat Pharmacy" and my meds are ready to ship. All I need to do is give them a "valid credit card number" and they would send them right out to my door. My reaction was something along the lines of "HUH"? Just the co-payment, they assured, which was actually quite low so that was not the problem. I explained that I had no idea what they are taking about and that I get my meds at the doctor. They said my doctor had called it in. I said well, YOU called my doctor but I still have no idea what this is or who you are and I am not paying for it at this time. I said anyway I need it by Monday and they said it wouldn't be here until Tuesday afternoon, and by the way someone has to be here to sign for it because it needs to be refrigerated immediately.

Again, WTH. I told them I was not going to pay them and they said ok, we'll hold it.

Since it would not be here in time anyway I did not bother to try to call the doctor and figure it out. I am seeing him on Monday and will ask then. What I DID do is call my insurance company. By now I had realized that I do not HAVE to use the home delivery in the first place, so I wanted to try to figure out who had called me in the first place and who these people are! I had also figured out - I THINK - that the other meds mentioned are the steroid and anti-nausea stuff I get in the IV during the chemo session.

So I called and got confirmation that it is MY choice to use home delivery, that they have their own and the only time they would use anyone else would be for "specialty meds" which probably includes the stuff I am getting. BUT!! She said she had never heard of Diplomat Pharmacy! She said it's possible they would use someplace she hadn't heard of because the specialty stuff is completely separate, but she would be surprised that she would never have even HEARD of it.

She also seemed to agree (though she didn't actually say so) that stuff I get in the doctor's office would not normally be considered to qualify for home delivery.

I am also concerned because while I am getting certain meds NOW, it is not guaranteed to be the same thing every time. I am only getting the first combo for a total of 4 treatments (3 more) and another combo for 4 more, all of which is subject to change based on many different factors, one of which being the weekly blood test that, at least IMO, could change things at the last minute.

Not to mention I would be expected to be home at the time of delivery, refrigerate them properly and get them to the doctor's office? Sorry, I am not willing to do all that. I don't really give a shit if it DOES save me money. I have reached my yearly out of pocket max so it doesn't make a bit of difference to me.

So I guess now I just wait to see what the doctor says. I think if he thinks this is a good idea then HE can pay for it (like he does anyway!) and have it delivered to him!

Tough decisions.

I would like to go on record and say I am STILL a HUGE fan of alternative and natural medicine. I have always hated taking any sort of medicine. Until this happened, the only thing I ever took was my thyroid medicine (the natural kind of course! And don't think I didn't first try "home remedies" before I finally gave in to the prescription) and advil only when my headache was intolerable. I took amino acid supplements to regulate my body chemistry and I have written pretty extensively in my personal blog about how well it worked. It changed my life! I have taken various vitamins and natural supplements at times but not regularly. I nursed my Dad through alternative cancer treatments and did his cooking for his anti-cancer diet. Although he did die of cancer, I believe his choices DID help him live a good life (the doctors said he was incurable).

I had wondered, at the time I was helping Dad, what I would do if it were me. Of course I hoped I would not have to decide. When I was diagnosed my greatest hope was that I would not need anything other than surgery. By the time I was told otherwise I had taken the time to consider my options and make what I believe to be a highly informed decision.

So there is a link going around on Facebook recently: Scientists Cure Cancer but Nobody Notices. I have seen this posted on a few of my friends' pages. Each time it's accompanied by a statement something like this:

"Read it, this isn't an exaggeration. Anyone who can still say that big business is looking out for it's consumers is delusional. Read this and tell me with a straight face that the pharmaceutical companies have your well-being in mind instead of your cash in their wallets"

and

"It's such utter evil to sacrifice people's health and lives over money."

Neither statement I disagree with, by the way! But is there perhaps MORE to the story?

I didn't even notice the date on the piece until about the third time I read it. It's not an official news article, for one thing. The original article (linked in this piece) is not even there anymore! This bit is over FOUR years old. Not that the date matters if it's true, but it is something to consider. It's interesting to me that Dad never mentioned anything about this theory - and he was up on all the latest "alternative" ideas.

Anyway, the last time I saw this I did post a reply to my friend's page. But before I share that, here is another of his friends' replies.

I hate to see one of my friends go through this.http://scienceblogs.com/insolence/2010/05/dichloroacetate_dca_and_cancer_deja_vu_a.php Long story short: more tests are needed to know if it even is effective. As of the date of that article I linked (1 year ago) only 1 human trial had been done, and it only involved 5 patients and wildly dissimilar regimens. However, it shows promise, and maybe one day the ACS and the FDA will put their stamp of approval on it.

Be wary of 'cures', especially in the age of the internet. Cancer is hard, treating it even harder.

The article linked is very interesting and presents a rational answer to the first one.

So here is my reply to my friend:

It's a really tough choice to make. There are SO MANY "simple cures" out there but with six children I had to go with the statistics. If I find out later that I could have popped a simple, cheap pill, I am going to be extremely pissed off!

(snipped his reply)

I'm getting it taken care of right now - have had 1 of 8 treatments so far. Do you have any idea how many "cures" there are out there? My Dad had every book ever written - and tried most of them out. He did alternative treatments through a place in Canada and while "all natural" they were NOT cheap, either (and of course not covered by insurance). He went to a "natural" treatment center in Mexico that cost him $20K - there are others besides the drug companies that want our money! I have seen the article you posted several times but believe me, there are myriad others floating around and all blame the big drug companies for "holding back the truth". I have no doubt that there is a relatively simple answer out there, and I have no doubt the drug companies will want to hold it back, but they are all a gamble. It is an agonizing decision and it seems we are at least temporarily screwed - physically, financially - no matter what we do. One of the hardest parts for me is they got all the cancer out and the treatments are to prevent it coming back or worse. I have lost a lot of sleep over the decisions I've had to make and will likely lose a lot more before it's all over. I am a huge believer in alternative medicine so I consider myself more informed than the average person on this topic...in the end it just comes down to (hopefully!) making the best choice we can for our situation - and really never knowing if it was the best or not! Sorry for the verbal diarrhea on your post - guess I should blog :-)

...so, I am blogging. :-)

Ouch!!

OK, so my head HURTS!!! Not like a headache - it's the scalp, but sort of deeper in some way. The best I can describe it is like a bad sunburn. My remaining hair is really short - less than 1/2 inch. Any time it rubs on anything it s painful. I can see why some people just shave it off. I don't know why I don't. Probably because I am not equipped for it, I would have to go somewhere, and while I don't like the idea of sitting there in front of everyone getting shaved it's more just that I would have to GO somewhere. Anyway it's not that bad - why pay someone to do what will happen naturally soon enough? I have to have SOMETHING to bitch about, right? haha!

I went to the wig shop today and tried on a bunch of stuff. The people there were really nice. They went into business to help chemo patients although they are open to the public and do a lot of wigs for the local theater. They talked to me about what I had in mind and were very patient when I didn't really know. We tried on several colors and styles. It was funny how things I thought would be perfect looked really crappy on me, and vice versa! One blonde bob made me look like my brother! I was willing to try different colors (my pre-gray color was reddish brown) and figured what better time to try being a blonde, etc. Well, I now know that I am not a blonde because it is NOT my color! LOL! The lady even said there was no way she would let me walk out in that wig. heh. So we found one I really liked - almost shoulder length, brown with some blondish highlights. I would have bought it on the spot if the other lady hadn't brought out this other one. Same length but more layered and wavy. The color was brown with reddish highlights just like my original color. When I put it on it was totally ME! I tried them both on again and still this was THE ONE. LOL, I felt like I had just found THE PERFECT wedding dress. "Say Yes to the Wig" hahaha. So, in the end I had to ask her to hold it as I didn't have the credit card on me. They are expensive, about $300. From what I hear this is a fair price for a good quality wig and this brand is a good one. So I will go pick it up tomorrow.

I was so excited to find the right hair. The lady said several had tried it on and it just didn't look right on anyone else - I said because it was made for me!

In the meantime I've been wearing my super cool hand-decorated bandanna we did in Girl Scouts just before I found the lump. I knew it would come in handy! I think it creeps the kids out a bit to see me bareheaded. But since it's not all that comfortable to wear something all the time, they will have to get used to it.

I certainly have progressed a bit in how much I care what others think. In the beginning I wore J's big button down shirts because they didn't make it as obvious that I was missing a breast. I wouldn't even let the kids see me in a T-shirt. Well, for one thing I could not lift my arm high enough to put one on...but now I just don't care as long as I am comfortable. It's a fact of life. And you know what? No one has said a word! Now I can wear a bra without it being painful I do wear it out in public. I have not gotten a prosthesis - I made one using a knee-high pantyhose and a handful of cotton balls. Ha!! As long as no one looks TOO closely it looks fine! Who knew! :-)

Funny

Funny how earlier today I could be SO upset about my hair, like I would completely JUST DIE if (when) it falls out. This evening I went out to a meeting as planned. The hair was coming out if pulled but not falling out and there was plenty staying put for now. I had been asked by several people if I would just shave it now and I cringed and said NO WAY! But after the meeting I was talking to someone who has been through all this and she happened to mention that she had her family help cut hers. I went home and asked the kids if they would help and I got the clippers. Two out of six did help. The rest watched but I think they were creeped out by the idea of helping. My husband did the rest. He apologized for it being uneven and I just had to laugh because it is all going to be gone soon anyway. In fact I had told the kids have fun, put your initials in, whatever! But they just clipped. Ironically it was S, one of the 9 year old triplets who did most and he was very gentle and did a great job. The oldest, age 20 did a lot too. The others were content to watch. I think it was probably good for all of us. I don't like it but it isn't as bad as I thought and now it's just DONE.

Hair Today, Gone Tomorrow

Just when I was thinking I might be safe. A couple of hours ago my hair starting pulling out. It isn't dropping out in clumps yet but when I touch it, it comes out.

I went out to the nearby wig shop that has been recommended to me. But it's closed on Monday and Tuesday. So I'll go back tomorrow - which may be best since it's easier to try them on with less hair than more I guess?

I think I am more upset over losing my hair than my breast. Is that weird?

A friend said I should go ahead and shave it. Well, I won't.

Great week

This has been a great week! I have felt completely normal. I have been working at GS day camp. I wasn't sure I would be able to at all but I've been there every day. By yesterday I was slowing down a bit and did more sitting, but although I am really tired I'm not any more tired than any other week of camp.

I hope the pattern holds for future treatments. I feel like I can totally do this if I get TWO good weeks in between the bad. The timing for this was perfect. The next one is the same timing before Cub Scout day camp and my class reunion. Unfortunately all the kids will be gone to camp during a good week. I would much rather have them gone during a bad one. Oh well I am trying not to worry too much about the future because I may feel completely different after the next one!

All I know is I used to take weeks like this for granted, and I hope I never do again. It has just been a perfectly boring, normal week. I love it! :-)

Now I am still having issues with dealing with other people. I can't stand when people come up to me and pat me on the back like I am a poor little puppy when they ask how I am doing. I am happy to be asked and to tell the entire story but PLEASE for goodness sake don't treat me like I am likely to keel at any second! Also it is NOT CATCHING so you don't have to shy away from me. Also and this is IMPORTANT please give me a little bit of credit! I KNOW I need to take it easier at camp and I sure as hell know I need to drink water, good grief!

I have not been back to church since my diagnosis and frankly I am dreading going back although I said I would this Sunday. I hope I am wrong but I am expecting them to all crowd around me with that sympathetic look in their eyes. I can't stand even thinking about that. I also HATE being talked about. A friend's husband was sick a few months ago and she would send out e-mail updates/prayer requests. I enjoyed getting them but after my surgery I was somewhere with her and another friend and she was updating us and I started thinking, wow, I would really HATE to be the one people are standing around talking about -- oh poor K, her poor kids, blah blah. Then they see me and all the "oh you poor little bunny, you mean they are letting you out in public?" starts. Ugh. LOL. I guess I need an attitude adjustment but good grief!!

Actually people the cancer is GONE and now we are just treating it. Please treat me normally!!!!!!!!!!!!!!!!!!

For this reason I have not made any further announcements to anyone. If you don't already know, then you will either find it out from someone else or just happen to hear it from me - not as an announcement but just a fact of life - which is all "it" is. I was debating whether to make any general statement on Facebook and decided against it. All I need is 5000 poor little bunny statements on my page. No thank you!

I feel like a bitch saying all this but it's the truth, so there it is.