Archive | July, 2009

One plus two equals three . . .

31 Jul

Got a return phone call from my oncologist’s physician’s assistant. After much discussion she agreed that I probably should have had a triple dose of herceptin yesterday (this took about 45 minutes to achieve). So, she told me, we can’t undo that. To which I said but, we can have me come back in for a double dose today, right? . . . one . . . plus two . . . e  q  u  a l  s . . . three (that’s me talking really slowly). There may not be time to get it done today, so I told her I would be willing to do it on Monday.

So, now I am waiting for her to see if my oncologist will let me have another treatment of Herceptin – a double dose – so that I can have no period without Herceptin in my system. I told her that if he doesn’t allow me to do it that I was canceling my surgery for next week so that I can stay on the Herceptin. I certainly do not want to cancel my surgery and I am guessing he is not going to want to let me come in for a second dose of Herceptin. This is so ridiculous.

And, as if it were to prepare me for his answer being no, she said just so you know, people miss their Herceptin treatments, I mean things come up, they go on vacations, things happen and they have to cancel their treatment and it is not a life and death situation if they miss a treatment”. I told her that I would never miss a treatment and she agreed – said she knew that I would not, that she knows me. So why are we even having this discussion. I feel bad for her – having to deal with me. Not because I am out of line – but instead, because the doctor she works for has created the situation that now causes me to be on her back. It isn’t pleasant. And, this is not the way I should have to spend my time right now, battling it out to simply have the treatment that I am supposed to have.

I am thinking that I am just going to go show up and see if I can get the double dose today, I would need to start it by three pm to have it done by the time they close. I don’t know what to do. I could do it on Monday, maybe just go in the morning.

AAAARGH!!!

31 Jul

Okay, so I called Dr. Hurvitz and asked about being off of Herceptin for five weeks and I was told, no way. That I shouldn’t be off of the drug at all, for any period of time, during treatment. As I thought. So now how to fix it. My current oncologist says I can’t have any more Herceptin until a month after surgery and that I should not even have a dose (as would normally be scheduled) next week because it is too close to surgery.

Yet, there is no evidence that this is what should be done. I don’t get it.

Anyway, I was told by Dr. Hurvitz’ office that I should get a triple does next week (or at least a double dose) so that then I can wait on my next treatment to be either two weeks or three weeks after surgery respectively. She said that either way, I should not be off of Herceptin for any time – meaning I need to increase the dose in order to allow for “time off”. But, it really isn’t time off because there will be a double or triple dose of the drug in the interim that will cover that period of time.

I called my oncologist and left a message with his physician’s assistant. Hopefully I will get a call back soon. I am inclined to go ahead with a double dose today (this would then make it three doses between today and yesterday). And then I would get my next dose (which would be  a triple dose) in three weeks from yesterday. That would allow me two weeks without a Herceptin treatment after surgery. I should be able to get in for a treatment of Herceptin two weeks after surgery without too much trouble I would presume.

This is so frustrating. I should not have to spend my time babysitting my own oncologist – checking up on him and making sure he has made the right call. Fortunately, his behavior makes it painfully obvious that he doesn’t know what he is talking about – which I think is very fortunate for me – otherwise I would bounce along and not know any better and be at risk. (Actually, I would still be double checking no matter what, it is in my nature. But, that being said, if I were with Dr. Hurvitz, I would not feel the need to double check, she is fantastic and she is at the source – where Herceptin was developed and studied). But, my oncologist . . . aaargh! I mean the idea that there may be microscopic cancer cells in my body that per this moron’s “advice” would go unchecked by Herceptin for the next five weeks and given the possibility to grow and land somewhere else in my body and wreak havoc is just maddening. Okay, now I AM mad at him. This is pathetic.

So, I am waiting for his PA to call me back. Since it is already after 1:00 pm, it is doubtful that there will be time for me to come in for another dose of Herceptin today. So, maybe I can do it on Monday. I am just so frustrated by this guy. I am going to call my insurance provider right now and demand a case manager be assigned to my case. This is so ridiculous. And, just so you know, this is the ONLY protocol for Herceptin. The drug was developed and studied at UCLA. So they (the doctors at UCLA) absolutely know what the treatment should be and how often. There should be no dispute what so ever and there should be no departure from what is the known, verified, proven by clinical trials, protocol.

Please say some prayers I don’t have to battle this out with my oncologist. I don’t get the sense that he is open to hearing someone else’s opinion – that seems fairly obvious from the fact that he has not even checked to see what the protocol is supposed to be for Herceptin treatment.

I am so done with this guy.

As I expected . . . being my own doctor

31 Jul

As expected, my meeting with my oncologist was pretty much useless. Ten minutes into our meeting (after I had asked him about how soon I would resume the Herceptin after surgery (this is the wonder drug for HER2 + breast cancer) he said, “You’re HER2 – right?”

Holy crap! Okay, here’s the deal. I ONLY would be on Herceptin if I was HER2+. So, it doesn’t take a rocket scientist (or an oncologist) to figure this out. Unbelievable.

I swear, he makes it up as he goes along. Seriously. This is just basic information that anyone could get with a simple search online. Or, by watching a movie about the making of the drug.

So, not only did he not read my file before our meeting, he doesn’t even pay attention to what I am saying or even what he is saying during our meeting. It is like meeting with a teenager who has ADD (except that he can sit still). I am done being incensed about it or enraged. There is no room for those feelings a week before surgery. Instead, I have to do my own homework and find out what the heck it is that I should be doing.

These were the two main questions that I had for him – to which I have no answers – or at least no answers that I can trust:

1. How will the fact that I wake up in the middle of the night each night drenched in sweat affect the healing of the surgical incisions? (Ever since the chemo I started having night sweats. I wake up completely drenched, my clothes and bedding are soaking wet. It seems to dissipate slightly between each chemo. So, my hope is that it will stop soon – since I am not having any more chemo. But, right now, it is still happening). His answer: it won’t. My feeling?  That doesn’t make sense. It clearly can not be good if you are dripping wet every night and you have stitches. I don’t know, but, it just does not seem to make a lot of sense that being sopping wet every night is going to be good for my incisions to heal. Finally he just said that I needed to ask my surgeon all pre-surgical questions. Punt.

2. How soon will I resume the Herceptin treatments? (My normal  schedule would be to have it the Thursday after my surgery). His first answer was: “Hmm, well . . . I guess you could resume a week after surgery if you feel up to it”.  My feeling is I don’t want to skip a week of this drug – we know it kills microscopic cancer cells and since I am no longer getting chemo, I don’t want to be off of this drug until I am cancer free. And, my feeling is that I don’t want my oncologist to be guessing. Then he changed his answer and said that I needed to wait a month after surgery to resume the Herceptin. Then it was that he would see me in a month after surgery and we would talk about it.

I have no idea what he is basing his decision upon (or should I say indecision on). It does not give ma a lot of confidence when he changes his decision like that from one minute to the next. Especially when he didn’t consult with anyone to change his decision from one week to four. It is like he just kind of makes it up as he goes.

I was scheduled to have Herceptin next – after yesterday’s treatment – for next Thursday, August 6th (the day before my surgery). But, he decided that I should not have it the day before surgery. So now, if I follow his “plan”, I will be off of Herceptin for at least five weeks. I am not so happy about that.

So, now I have to get in touch with Dr. Hurvitz (hopefully I can reach her today) to find out what should be done Herceptin wise. It is my understanding that you do not want to be off of the drug for any significant period of time (until you have completed treatment of course, and then you no longer take Herceptin). After the chemotherapy, Herceptin treatments go from every week to once every three weeks (patients are given a triple does every three weeks). This is what the studies show is effective. And, it nice to not have to go in every week and get stuck in the arm.

I am guessing that I was probably supposed to start the every-three-week-triple-dose prior to surgery. Instead, he just wants me off of it for what will be a period of five weeks. I am not happy about that. They could have given me the triple dose yesterday. This way, I could wait three weeks for the next one. But, perhaps when I reach Dr. Hurvitz she will say that it is normal to be off of Herceptin during your recovery from surgery. But, I don’t know. And, since my oncologist clearly doesn’t know AND since he clearly doesn’t think he should place a call to someone who does know (this is obvious from his working it out during our meeting – it is like he is thinking out loud and exposing his ignorance all at the same time – he doesn’t base his decisions upon anything as far as I can tell).

I had other questions for him, but these were less critical and not really worth repeating here. I did ask him about whether I should get a port for the remaining Herceptin treatments (it is now clear that the topic of additional chemo is off the table – since if I were slated for more chemo a port would be required because I don’t have anymore chemo veins in my left arm. Taxotere is very hard on your veins so they do not want to keep putting it into the same vein – especially the smaller veins in your arm. This is why they opt for a port. But, since I was doing neo-adjuvant chemotherapy (chemo before surgery) I did not have a port. It was difficult, but we did it (my nurse and I) and so now the port is optional because Herceptin does not pose the issues that chemo drugs pose for veins). So I guess last week when I told the nurse that there was not a single clinical trial that had ever been done on HER2+ breast cancer where more than six rounds of chemo had been administered made its way back to my oncologist. I guess . . . or maybe he just forgot that he told me I was likely going to have additional chemo.

Oh, and the other change in his attitude was this: -last meeting he told me that there was no way that I could have a complete response to the chemo prior to surgery – meaning that there was no way that the chemo could have killed all of the cancer. But, when I told him that my surgeon could not feel a lump in my right breast during the physical exam she did last week (in fact, she said she could not tell the difference between my right breast – the one with cancer – and my left breast – which we believe does not have cancer) He told me, “Well hopefully we won’t find any cancer left when you get to surgery”.

I give up. Maybe he is bipolar. Yeah, Dr. Lisa has completed her diagnosis . . . he is bipolar.

It is a good thing that my surgeon could not detect any lump last week. But, I do have dense breast tissue and so that does make it harder to detect lumps – part of the reason I am in this situation in the first place – but that is another blog post.

Okay, well, enough of my frustrating meeting. I have work to do. I will get a hold of Dr. Hurvitz (hopefully right away) and find out what it is that I need to do.

I wish I could switch to her now. But, I can’t because I want to complete my surgery at Hoag with the surgeons I have already screened. Especially my reconstructions surgeon who is one of only a few that is trained in the latest types of reconstruction techniques.

Well, wish me luck with my homework!

Seeing my oncologist today . . .

30 Jul

I spoke with my mentor MJ yesterday. She has been through breast cancer and has had much of the treatment that I have had and will have to have – sans the radiation. She said that I should insist on a Mugga test (a test of heart function) prior to surgery. I am slated only to have an EKG prior to surgery. MJ said that with the drugs that I have been on (chemotherapy and the Herceptin) that I should definitely have this mugga test to make sure that my heart has not been damaged by the drugs. In particular, she said that because I went into anaphylactic shock from the time that Taxotere was administered without steroids, that I should insist on getting a mugga test to rule out damage to the heart after that event. I agree. However, I don’t know that I will get any doctor to agree. But, we shall see.

I see my oncologist today (the one that doesn’t read my file). I cancelled our last appointment because I saw it as pointless and I had already seen the specialist up at UCLA the day before. My oncologist was pretty surprised by my canceling. But, I just could not meet with him. I felt my health depended upon my NOT meeting with him. He always brings me down with his ignorance. He really does not have a clue about the kind of cancer I have. He didn’t even know which chemo drugs I was on or that I was on Herceptin – or at least he didn’t know the significance of my being on Herceptin.  Instead, he talked about the possibility that I could get brain cancer because Herceptin does not reach the brain.

What a moron. I mean what is the point in telling me that? When I told the specialist up at UCLA what he had said, she was angry. She said that it was ridiculous for him to put that on the table and that the chances of that happening were very, very low. And, she said if it were to occur, that there was a drug for that too that is like Herceptin but that reaches the brain. (Dr. Doom instead told me that I would have to have brain surgery – – good Lord, what an idiot). I mean that is so pointless to talk about. It’s like saying, “You know if you trip and fall you might break your hip. You might get arthritis one day and have a lot of pain in your hip. Then you might have to have hip replacement surgery. Then you might have complications from the surgery and then . . . ”

I mean really, what is the point in telling me about some remote possibility and then describing in detail the treatment for that remote possibility and how problematic it is. What an idiot. The specialist up at UCLA was so upset by his telling me that. Her exact words were: “You need to get out of there, he doesn’t know what he is doing.”

She did, however, like my surgeon. She knows her, has a lot of confidence in her. So that is good. I like both of my surgeons very much. I have two surgeons, the surgeon who will remove my cancer and my reconstructive surgeon. They are both excellent.

I feel very lucky to have the reconstructive plastic surgeon that I have. She does amazing work. She is not part of my network. But, I was able to get her anyway (thankfully my insurance agreed to it). She is the only surgeon at Hoag (and one of a very few surgeons around) trained in a type of microsurgery for breast reconstruction. It is really amazing what they can now do. Unbelievable. So, I feel very lucky in that regard.

I have to say that when I was first diagnosed, the last thing I thought about was reconstruction. I just wanted them to go in and get it out. All I could think about was surviving. And, of course, that is my main focus. There is not much point in having pretty breasts or breasts at all if I still have cancer. So, it is all about becoming cancer free. And I will. But, I realize now that part of surviving is having great reconstruction results. So it is great to know that I have a top reconstructive surgeon. She specializes in reconstruction (where as most breast reconstruction surgeons that people get are also cosmetic surgeons and handle everything from botox to liposuction). I am grateful to have my surgeon.

So, I am bracing myself for another meeting with Dr. Doom. Even though I know he doesn’t really have a clue about my cancer or the significance of my getting Herceptin (the wonder drug for my kind of breast cancer), I am still affected by what he says. The last time I had a meeting with him I left the visit in tears. I hate to admit that this jerk – who has no time to read my file and argued with me about how many chemos I had been through – could reduce me to tears, but he did. It was a combination of the fact that he had not read my file, that I spent the entire time correcting him about very basic things in my treatment and diagnosis and that he told me that there was no way that I could have a complete response to chemotherapy. (A complete response means that the chemotherapy killed all of the cancer). As soon as he told me that, I knew he was wrong. Who is he God? He can not know that.

I knew that I should not give any credence to what he said that day because he is simply ignorant (ignorant about my type of cancer and ignorant – by choice – about me). But, even though I know this, it was impossible for me not to attach some significance to what he said – in spite of the fact that he was wrong about so much during our meeting. Still, it was so hard not to think that maybe he was right. And, it was just so upsetting to realize that he is not invested in my care at all. That felt horrible. But, that is why I am seeing the specialist up at UCLA. She says I am having a great response to the treatment so far. My surgeon also says that I am having a great response. In fact, she said she can not feel the cancer any longer and she thinks there is a good chance that we will find that I have had a complete response.

I am going to let him have it today if it becomes clear to me that he has not read my file. I should bring a tape recorder to tape that discussion. Maybe he will surprise me and he will have read it. I really hope so because it is so depressing to see him and to go through that – learning that he hasn’t bothered to prepare for our meeting and that he clearly has no idea what is going on with me.

I know he finds me difficult because I have expectations. I come in with my legal pad (I’m sure he loves that) and all of my questions and well, he doesn’t care for that I don’t think. But, he works for me. At least he is supposed to.

Well, hopefully the meeting goes well. Maybe he will do better after my canceling our last appointment. He didn’t get paid that day. He was really perplexed by my canceling. I was in the office for my Herceptin treatment and I told the nurse I didn’t want to meet with him. I told her why (that he doesn’t read my file and that he depresses me). So she told him that I didn’t have any questions and that I didn’t feel that I needed to meet with him that day. He came over and said, “So you don’t want to see me today, I am hurt”. I guess now he is a comedian. He then said that he had to see me before surgery and actually scheduled today’s appointment himself – that may be the most work he has done on my case to date – scheduling an appointment. 🙂

I have to think I am the first patient who was already there at the doctors office (had to be there for Herceptin) and told him to go away basically. I mean, I had to sit there for treatment anyway, so it wasn’t like I was saving time by not meeting with him or getting to go home early because I cancelled. Instead, it was a clear message that I did not want to see him. So maybe this time he will prepare for our meeting.

Well, I guess I am being pretty harsh. I do have to give him credit for suggesting that I take Claritin for the bone pain that is caused by Neulasta (the drug I get to boost white blood cell production). The Claritin really worked. But, he gets no points for his bedside manner or his lack of preparedness for our meetings.

Wish me luck with this guy today. I just can’t let him take me down. So, I won’t. In one ear out the other.

Feeling pretty good

29 Jul

I was able to get some sleep last night. That was a first in a while. And, tonight bodes well too. I feel a lot better.

Molly has her vacation spot all picked out (thank you Marv). So I can relax about that now. She seems to know too . . . I know that sounds silly but . . . my dog has been in a complete funk since my diagnosis. Moping around, won’t go for walks, doesn’t play with her toys, acts uninterested in food she normally goes nuts over etc. What does a dog look like when she mopes? Well, I don’t know, it’s hard to quantify, but she has definitely been moping. Well, like I said, she must know things are improving because today when I came home she acted pleased to see me and ran around the living room with one of her toys (this was her usual greeting when I came home). I completely forgot how she used to do that.

So maybe Molly can tell things are looking up. I do feel pretty good. And, my blood work looks pretty good – especially for one week out of chemo (which is when the blood work was last done). I will have blood work done again this Thursday. Hopefully it will be even better and I will have more red blood cells by then (I am in within the normal range right now, but on the lower end of normal). Still, I hope to get some better numbers this week.

I am a bit less anxious about surgery now. At least right now I am a bit less anxious. I went to a support group today and had an opportunity to speak with several women that have had the same surgery. They all got through it and so will I.

I also saw some friends there that are still going through chemotherapy. They are losing their hair, eyelashes and eyebrows. One of the gals was pretty choked up about it. I felt so bad for her. I still have eyebrows and eyelashes. I really didn’t want to lose either – for some reason the idea of losing my eyebrows and eyelashes bothered me more than losing my hair. I guess just losing the definition in my face. I don’t know. While I did not lose my eyebrows, my eyebrows did get thinner. But, now my eyebrows are growing back in. And my eyelashes, are still hanging in there too. But, I hear that you can lose your eyelashes a month after going through chemotherapy. Not something I am worried about anymore really. I guess I have bigger concerns 🙂 It is funny what doesn’t seem important anymore.

I just looked at the clock and it is after midnight now, so my Dad is 80 years old. It is his birthday today – July 29th. Happy Birthday Dad. I love you.

Well,  I am pretty tired. Hopefully it will be two good nights of sleep in a row.

Here is a picture of my Dad last year on his birthday with my brother Steve. And also a picture of my Mom with my nephew Matthew on the same day.

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Surgery in eleven days . . .

27 Jul

I will have surgery on August 7th. There is so much to do between now an then. I need to find someone to take my dog for a week or two (she is too old to be kenneled and, besides, she has been freaked out enough by my ups and downs over the past four months that I think boarding her could prove to be disastrous).  So if anyone wants to take my dog for a spell, let me know. She’s pretty easy. Even if it were for the weekend of my surgery (as I defnitely will not be here to look after her) that would be a start at least and then perhaps I can find people to take her for a few days at a time? I don’t know. I just know that it will be too much for me to have her here while I am recovering. When she is worried about me she jumps up on my bed. Anyway, I just can’t have her here for those first two weeks post op.

So today I have a hospital bed being delivered to my house. Sounds a little grim kind of . . . but, it makes sense to have one. I will need it to be able to get in and out of bed by myself – at least for the first few days to a week after surgery. This way I won’t need someone to help lift me out of bed when I need to get up. So, I feel fortunate to have a hospital bed coming.

I have a lot to do to get ready for surgery and my head is spinning a little from it all. It is kind of overwhelming. There are caretakers to arrange (I can’t be alone for the first week after surgery), shopping to do, cleaning and organizing to do. I also will not be able to drive for a while, perhaps three weeks or so, I am not sure. So, I will need rides to doctor’s appointments and to my Herceptin treatments, which I believe will continue weekly after surgery (not sure about that, I need to check on that – there’s another thing to add to my list). I also need to go to Hoag for pre-op testing (EKG and chest X-rays, blood work etc.). And, while less critical, there are movies to rent (if any has any good comedies or dramas to loan me, let me know).

I am most anxious about arranging caretakers and finding a place for Molly (my dog) to stay.

I will not be able to cook or prepare food for several days after surgery. And, I will also probably be stuck upstairs for the first couple of days until getting up and downstairs is do-able.

It is my hope to have people stay with me in shifts – like I have done with the chemo rounds. The difference this time is that it is for a longer stretch that I need coverage for. The other difference is that I won’t be “going through chemo”. Which is a good thing. But, I will be weak and need help having food brought to me and to just be here with me. I will be able to get up and walk around – just no lifting at all.

Well, there is much to do, so I had better get to it.

A day of family and friends . . .

27 Jul

Yesterday was a pretty full day. I had breakfast with friends at a favorite spot in Seal Beach. Then to my brother’s house in Long Beach to spend some time with my parents, my brother and sister-in-law and my nephew Garrett (who will turn one year old soon). Then I went to Dana Point for music in the park (a bluff overlooking the water) with cousins and friends. The band was good and the food and company were even better. It was a really good day. Here are some pictures to prove it.Me&girls

This is me with my cousins Whitney (L) and Jeannine (R)l and Jeff

Below: me and my cousin Jeff