Tag Archives: surgery

Pre-op hop . . .

5 Aug

Well it is getting pretty close to surgery and I still have a lot to do. My hands hurt too much to type right now (still a left over from the chemotherapy). So, I will keep it short.

I don’t know if I can get everything done that I wanted to get done prior to surgery, but I am doing my best. I can feel how exhausted it is making me and so I think I need to balance getting everything done with actually getting some rest – the rest has not been happening. So, I guess something has to give because skipping the getting rest part is really not an option. So perhaps I will have to give up on some of the things on my to do list.

Hopefully today goes smoothly and I get what I need done and also get some much needed rest. It is definitely a struggle. And, then there are the emotions about having this surgery. Letting go of a part of my body. Wow. I know it is not like it is a limb, but it is a big deal. I can’t even express how it feels, certainly not here anyway. And if I hear another person tell me that I am “getting breast implants” like it was some sort of prize, or that I will be the new and improved Lisa (that is my least favorite comment), well, I think I will scream. The idea that I will somehow be better than I was before the surgery because I will have perky breasts (breasts that I will not be able to feel, that cannot breast feed a child . . . breasts that are not mine) is really so odd and such a reflection of our culture being so focused on being barbie. I would never in a million years have opted to have plastic surgery or breast augmentation. Don’t get me wrong, I am incredibly grateful that I CAN have reconstruction and I am incredibly grateful to have the surgeons that I have. My breast reconstruction surgeon is amazing and does amazing work. But, this is no prize I can tell you.

I will report back soon.

Wish me luck.

Oncologist said no, now what?

1 Aug

My oncologist said no to my request that I not go off of Herceptin. I had consulted with UCLA (where Herceptin was developed) and they told me that I should not be off of Herceptin for any period of time until I was done with treatment. But, my oncologist disagrees. Yesterday I demanded that he give me a medical reason for his decision to not follow UCLA’s protocol. His reason was that Herceptin poses a heart risk.

I have been on Herceptin since April 2nd. The heart risk is 1%. I have had two echocardiograms which have both come back as normal (a baseline before treatment and another two months into treatment which shows my heart function to be normal). I have had chest pains off and on throughout treatment. But, have not had chest pains in a month.

The 1% heart risk was shown in studies that involved women of all ages, all levels of health (including women with existing heart problems, high blood pressure etc.). They have done no study on 44 year old healthy women with no underlying heart problems to see if the risk to the heart from Herceptin is lower than on percent. But, the presumption would be (I would think) that my risk would be even lower than one percent.

I spent most of the day arguing with my oncologist’s physician’s assistant. Then she would take my argument back to my doctor, he would tell her what to tell me, then I would dispute that, and then she would go back to him, back to me, back to him and so forth – that was my entire day. He can’t even pick up the phone and speak with me directly.

She just kept telling me that with the risk that Herceptin could damage my heart that my oncologist would not allow me to continue it until one month after surgery – or longer – depending upon how long it took me to recover. His feeling is that there is an increased heart risk with surgery (the strain of surgery on the heart coupled with being on Herceptin). But, it is such a low risk. I told her – “look, we KNOW that I have cancer. We KNOW that it is aggressive. And, we KNOW that Herceptin is extremely effective in killing my cancer. So, rather than allow a possible, remote risk keep us from preventing a KNOWN risk (that of my cancer growing at a rapid rate if it is allowed to go unchecked by the very drug designed to kill it) I would rather follow what UCLA would do”. It seems foolish to do otherwise.”

And, I told her that he can’t have it both ways – two days ago I asked him to order a more comprehensive heart test (one that shows more of the heart function than an echocardiogram). He refused on the basis that I do not seem to have a heart problem. His exact words were that my heart function was normal and that he did not think that Herceptin was posing a problem for me.  Now, he cites a concern over Herceptin affecting my heart as a basis for not following protocol and taking me off of Herceptin. I have checked – this is generally only done in patients who are elderly or who have an existing heart problem.

I got nowhere yesterday. And, the poor PA, she was practically in tears at the end of the day. I felt bad for her, but it is her doctor that has put her in this position. She agreed that if it were her – in my shoes – that she would have the same concerns.

So now I am waiting to hear back from UCLA to see if they can fit me in (at my own cost – which could be at a significant cost) for a Herceptin treatment next week. Or, to find out from Dr. Hurvitz if it is wise to skip a treatment.

I can’t believe I am having this fight with my oncologist. He is so arrogant. First of all, he made his decision without ever consulting the appropriate protocol (this was clear from the way he answered me in the first place: “Hmm, well, I guess . . . “). Not once did he ever point to a reason or basis for his guessing.

And, the PA yesterday kept telling me about “this one patient who had trouble . . . ”

To which I told her I did not want or need to hear about anecdotal situations. That I wanted my medical treatment based upon studies and current protocols. UCLA is one of the top breast cancer centers in the world. They developed the drug Herceptin and know best how it works and how and when to administer it. Yet my bafoon of an oncologist is so arrogant that he thinks he should supplant his opinion over UCLA’s well documented, studied and proven protocols. I am livid about this. The fact that I have to spend my time arguing over something like this is so frustrating.

I am putting it aside for the weekend (although UCLA may get back to me via email over the weekend – the nurse practictioner that I spoke to at the end of the day said she would see if she could get an answer from Dr. Hurvitz about my getting in for treatment next week – she said she might hear back over the weekend and that she would let me know via email – amazing). So maybe I will get some good news before Monday. But, either way, she said she would get back to me no later than Monday. Time is kind of the essence here.

In my reading today, I have learned that there are Herceptin resistant HER2 cancers. They do not know why some HER2+ tumors are resistent to Herceptin. But, they are developing new drugs that show promise and may be available in one to three years. I am wondering (from my little bit of back ground in microbiology) if, like strains of bacteria can become resistant to antibiotics, that HER2+ tumors can become resistant. This is what concerns me about the time off of Herceptin – if I am off of it for five weeks, will this give any remaining cancer an opportunity to continue to grow – unchecked by the Herceptin – and worse yet, will this unchecked cancer have the potential to become Herceptin resistant? I am not trying to borrow trouble here, but, the reason I can survive this cancer IS because of Herceptin. Without it the recurrence and mortality rate of this cancer is very high. Not good. Herceptin increases survival by leaps and bounds.

I do not know if the Herceptin is working on my cancer – I can only presume that it is because the cancer has defnitely decreased significantly during treatment. But, it is not known yet how much cancer is remaining (if any) and I don’t know if that is due only to the chemotherapy or to a combinatino of both. The only way I will know is to be on Herceptin and be monitored. In all likelihood the Herceptin is working and will work. But, I do not want to be off of it for any appreciable time.

Well, that is enough on that for now. I will write more when I know more. Please say prayers for me on this. I really appreciate it.


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.

"Huge Blues" . . . the band, not my state of mind :)

11 Jul

Huge Blues BaldThis is a picture of our blues band, “Huge Blues”. From left to right: Tim lewis – vocals and guitar, Brett Caplinger – harmonica, Paul Hughes – guitar, center, me – stand up bass and vocals.  The whole band is bald now 🙂  Paul shaved his head so we would all be bald 🙂 Thank you for doing that Paul, very sweet. My brother Steve also shaved his head. He did it on the same day that I did. He lives in San Diego and sent me a picture from his cell phone as soon as he had done it. I will post a picture of the two of us up here soon.

Huge Blues is playing at the Orange County Fair tomorrow at 3:15 on the main stage. It should be fun. Hopefully it will not be too hot. The heat is not my friend these days. But, it is a short gig, so it should be fine.