Sorry been too groggy to be bloggy . . .

29 Aug

This past week has been a series of doctors appointments, pretty much one every day this past week. Also, had my Herceptin treatment (finally) this past Monday. It was my first three week dose (prior to now I have gone weekly for Herceptin, but now I only have to go every three weeks for a triple dose). The Herceptin treatment made me sick (they ran it over one hour, it is supposed to, at least UCLA does it this way, be run over 1 1/2 hours). I have always had to have my weekly treatments ran over an hour instead of 30 minutes (the usual infusion time for a weekly dose). Otherwise, I have reactions and get sick after wards. So I figured that when I went to the “once every three weeks dose” that is usually done in 90 minutes, that mine would be done in the normal Lisa double time. But, my nurse (not the one that I adore, who understands my sensitivities to infusions and how I react) said no. I asked her to explain it to my doctor and she did and he also said no. They said I could have a one week infusion over one hour or a three week infusion over one hour.

What is their problem? So, I was forced to choose between getting the amount of Herceptin that I knew that I needed but also get sick or take a smaller dose and leave without getting sick. I decided to get the triple dose (knowing I would have some reactions) because I have already been off of this critical drug for nearly a month now and I just did not want to risk taking the smaller dose after such a long absence from this drug.

So, I felt pain during the infusion (totally unnecessary if it were run over a longer period of time) and then came home with a fever and flu like symptoms which lasted a few days. Trust me, coughing after you’ve had a mastectomy is very unpleasant.

I spoke with my favorite nurse about the shortened time for the infusion (she was out on Monday, so could not intervene) and she said that she would straighten it out for next time. She feels that it should be administered over about 2 1/2 to 3 hours with a watchful eye and slowed down if I experience pain. I just can’t afford to go in for treatment when she isn’t working that day.

Let’s see, what else. Oh yes, saw my reconstruction surgeon – she waited on expanding me (I am glad for this, less pain to deal with this week). She also does not want me typing right now – so this will be my last post perhaps for a week or more – bummer.

Saw my oncologist (not the specialist that I love) –  nope, the goober that I detest. He was less unpleasant after I kind of lawyered up on him last week. He is now too afraid to say anything negative (which by the way, was NEVER my point. I want the truth, whatever that is. But. he can’t keep anything straight during our meetings and his “advice” once nearly killed me – sent me into anaphylactic shock – I have now since found out that the PA who advised me incorrectly on premedications for one of my chemo rounds was working under him and following his advice – NEITHER of them – the doctor or his PA – consulted my chart because if they had they would have seen my prior allergic reactions and would have instructed me to take more of the medication not less, or as in their case, telling me to take none). Anyway, need to stop dwelling in the past.

I hope to see the specialist up at UCLA very soon to go over my pathology report. I am told right now that I have about a 20% chance of having a recurrence within the first year. This is what my oncologist said. Have no idea what that means, the first year after treatment is completed or the first year after surgery or what? I don’t bother following up on many questions with him now because he nearly always conflicts himself and I am left worse off, more confused than ever and pretty depressed. So this time, I went the, “not going to allow the butthead to depress me” route and left it at that. Besides, my specialist up at UCLA is the one I trust and so I will hopefully feel better after seeing her again. Until then, I will hang on to my having an 80% chance of NOT having a recurrence within a year (whatever that means). I mean, what does it mean for the year after surgery, or the year after I have completed treatment or what? I don’t know and maybe really know can tell me these things. But, I sure won’t waste my time asking Dr. Bonehead any of these concerns for his answers will not shed much light on anything or be something I would trust or rely on.

Let’s see what else, oh, I am anemic now, can really feel it too. Very slow moving. I was very anemic after surgery (probably from a combination of blood loss and chemotherapy), but have improved significantly since then and I am sure I will get back to my non-anemic self soon. Until then, the sloth makes her way up or down stairs out of necessity only (damn stairs)! In the hospital they wanted to do a transfusion, but I had not signed a consent for that (I am such a brat aren’t I?) Anyway, I told them I would not consent until my surgeon came by to see me and low and behold, yeah, my surgeon agreed we should wait on the transfusion. Phew!

Okay, it is pretty much too painful to continue now. I have stop typing.

I am doing okay, still recovering, still need lots of help doing just basic things and would love to hear from you (phone calls are great and so are emails or messages here or on face book messages). Just remember I can not type back at least not for a while.

Keep praying for me and for my family. Love to you all.

Lisa

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