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. :-)