Tag Archives: Herceptin

Easter has become my Thanksgiving . . .

31 Mar

Last weekend I was invited to attend a blogging summit. The summit brought together cancer survivors (some 15 or more years out, some just a year out and some still in treatment). All of us blog or have blogged about our experience. We were also joined by medical practitioners (of many types: oncologists, radiology oncologists, naturopathic MDs, nutritionists, lymphedema specialists, nurses and and more) as well as care providers (who also blog) and other writers, journalists. I will write more about the blogging summit in a future post.

For now I want to simply say that being able to meet the amazing cancer survivors (some of whom I had only known online, in the virtual world, and some I had never met – virtual or otherwise) in person was truly incredible. I felt like I was meeting soul mates. There was just an immediate understanding of all things amongst us. That is the best way I can describe it.

There is a loneliness that cancer can visit upon you; does visit upon you I think (at least it did for me). I felt it most prominently four years ago – when all I wanted to do was to escape my body, run from it since it was, after all, seemingly trying to destroy me. It was a very strange sensation – one of being removed from seemingly everyone – despite the conscious and amazing presence that so many individuals in my life made to be there for me. I still felt so isolated. I was the one that could die from it and I was the one that had chemo coursing through my veins . . . you get my drift.

When cancer hits you are truly alone – at least with your cancer and your body. No one else has exactly the same thing, no one else will react exactly the same way (to treatment, to fatigue, to the pain, to the fear, to it . . . to cancer). No one can really tell you when you are in the throes of it whether you will make it or whether you will survive. And all around you there are both stories of survival and life as well as that of loss and death. And none of it makes any sense.

So back to the blogging summit. CTCA (Cancer Treatment Centers of America) hosted their second “blogger’s summit” in Arizona. I was fortunate enough to be invited . . . wow was I fortunate.

I met so many wonderful and amazing individuals at the blogger’s summit. To say that there is a kinship amongst those of us who are “survivors” and writers does not really quite capture it; not the depth of it anyway. It is something indescribable and quite frankly took me a bit by surprise. And, it is beginning to fill a void that I have felt for some time.  That sense of being removed from those around you; that loneliness . . . some of it that still lingers is melting away . . . a little. Meeting these wonderful people, with whom we have shared experience (that we wish we did not share) has helped me to feel less alone; less fearful.

The moment I became a cancer patient I became different. I was on the outside, removed somehow from everyone else . . . lonely.

At the summit we spoke about many things, there were presenters and questions etc. But, what was absolutely the most meaningful was the time with others who have been through, or cared for someone who has been through cancer (because they understand). We joked about cancer – not something everyone is comfortable doing. And we shared our stories, some of our fears and we talked about a future without cancer and survivorship. This was a room full of activists – women and men who want to spare others from having to either go through this disease or to at least spare them from having to go through it perhaps the way we did. And of course, we don’t want to go through it again ourselves.

I am so grateful for the time with these amazing individuals. And I look forward to these new friendships.

I am four years out from my diagnosis. I began treatment the week of Easter.

As someone who was raised Catholic, Easter has always had some meaning for me. But it is all the more meaningful for me now. Four years ago it was my first Easter with my youngest nephew . . . just a little baby then (who has now grown up into an exceptionally bright, talkative, engaging and delightful four and a half your old boy). That first Easter with him was very surreal.

A week into chemo, still a full head of hair (that was due to fall out) and the ever present thoughts of whether I would be there for his next Easter . . . all of that was surreal. I remember drinking up every moment with him and with my family that day. No one competed with me to hold him . . . the newest baby in our family. No one took him from my lap. No one. And although it was never said – we all knew why: it might be the last time I got to hold that baby.

I actively pushed away thoughts of whether he would he ever know his Auntie. But, I know it was a very present and real theme of that day, for all of us . . . for all of us except for the baby 🙂

Now he is four and a half. He knows his Auntie.

He pushes away pictures of me where I am bald and says “no, no, no”. . . he knows it is me in those bald photos. But somehow he knows that it was sick Auntie or at least not the Auntie he wants to see. And, in spite of the fact that some of those bald pictures with him are my absolute favorite, I kind of like that he now pushes those photos away . . .

These are a few of my very favorite pictures I possess:

April 2009, my nephew’s first Easter, a few days after my first round of chemo and a few weeks before I would be bald.

More of the same day . . . the only family member who could truly freely enjoy the day . . . what a gift he was and is . . .

July 2009, was still going through chemo. This is one of my favorite pictures . . . but, my nephew doesn’t like it 🙂 So I keep it to myself 🙂

So on Easter of 2009 I wasn’t sure if I would make it to Easter of 2010. Easter 2010 came, and I decorated Easter eggs for my nephew’s first Easter egg hunt. I was still in treatment then, very tired and still not sure I would make it to another Easter. But, again, my nephew, aware of none of these things, was an incredible source of joy and energy for me. Here he is delighting in his very first Easter Egg Hunt . . . that I was very grateful to be around for . . .

Happy Easter! My nephew Garrett, sheer delight!

Easter 2010 🙂

 

 

 

 

 

 

 

 

 

Happy Sunday and to those who are celebrating Easter, Happy Easter. I hope for many more Easters for all of of us.

Much love and peace,

Lisa

This is me off of herceptin . . .

11 May

Hello all,

I was going through some pictures and realizing that I really did look sick a while back . . . which means that by comparison, I really don’t look sick (at least I don’t think I do) now.

So, I thought I would share a few then and now pictures . . .

THEN:

Herceptin Treatment (unlike the 8 hour chemo/herceptin days, the herceptin-only treatments took just a couple of hours, still, I do not miss these days).

In between treatments, waiting to see my oncologist. This was about 8 months into treatment, post surgery and radiation. These were the days when I couldn't even stay awake in a waiting room. I was so tired and weak back then, phew.

NOW:

This is me with my friend Amber at my first baseball game in over a year. (Go Angels!) Now off of herceptin . . . and sporting an actual haircut, sort of . . .

Surgery scheduled . . . abnormal EKG . . .

11 May

I have a new surgery date – May 17th. I haven’t written because I have been trying to get everything done in time for the new date – take care of pending things, arrange for caretakers post surgery (I will need to have a person stay with me for a week after surgery), dog care, cleaning, and soon – some cooking (probably this weekend – I eat organic food as much as possible – so I plan on preparing some meals ahead and freezing these so as to make everything easier post-op).

Yesterday was taken up with phone calls – literally 6 hours of my day yesterday was spent on the phone with medical providers. At one time, in an effort to speed things up – I was on two phones – on hold with UCLA Oncology and on hold with Hoag. It proved to save me a few minutes, I guess. Although, I am not sure that the in-stereo-hold-music was worth it.

So now I have new surgery date, but, it may not go . . . my pre-op EKG came back abnormal. So, now it is off to see a cardiologist – only my cardiologist is not available until . . . yep, you guessed it . . . May 17th. Charming.

Instead, I have an appointment with a nurse practitioner who is board certified to do pre-op clearances in cardiology. I am not too keen on this option. But, it is what it is.

The drug herceptin has cardiopathic potential – meaning that it can cause damage to the heart. I was on herceptin infusions for over a year. It was something I was worried about before I embarked on my treatment plan last year. But, while there is a risk that herceptin will damage the heart – the risk of not taking herceptin is certain – without herceptin the cancer would go unchecked, unstopped by even the most drastic of chemotherapy protocols. So, really, there was no choice.

While on herceptin a patient is monitored by a cardiologist. I have echocardiograms about every three months. So far these have all come back normal. I am waiting on the results from the most recent echo (I had this test last week). So, hopefully everything will turn out fine.

When I had the EKG last week, it was on the same day the I got lost trying to park, ugh. I was very distressed by the time I found my way to the pre-admission screening at Hoag, so maybe that is why the EKG was abnormal? I don’t know much about this stuff. And, I am hoping that I do not have to learn much about it either! 🙂

So, maybe I will have surgery on the 17th and maybe it will be postponed.

Hopefully everything will be fine.

Please say some prayers, I really appreciate it.

Love and peace,

Lisa

Gathering up some energy . . .

1 Sep

So, I decided not to take a pain pill this afternoon . . . we shall see how that goes. But, I really am tired of being tired and I think that the pain medication is probably contributing to my sleepiness. I can’t imagine getting addicted to this stuff. I realize that people do, but, I just don’t get it. It’s not like you feel good taking it. You just feel out of it and, the pain does seem to go away for a while. But, it’s not like you take the drug and you are flying high and can’t wait to take another. Maybe that’s not what it is about for people who do get addicted to pain medication anyway. I wouldn’t know. All I know is that the sooner I can be off of this stuff and resume my normal life the better.

I can’t drive until I stop taking it (not a car, not a bike). And, I’ll bet I can’t even operate heavy machinery while I am on it . . . do you see the the limitations I am experiencing?

My main problem with it is the sleepiness – assuming that is what the sleepiness is in fact from. I have actually fallen asleep while talking on the phone (makes me a little concerned about calling back prospective clients).

A professor from UC Irvine’s new law school called the other day expressing some interest in one of my books. This is pretty exciting as I really want to get into UCI and had planned on marketing to them this past Spring for their Fall starting semester. But, cancer kind of got in the way with that. Anyway, I guess this professor saw our books at a local law bookstore (the only one in Orange County) and she wants to make the Torts book (that is the subject she teaches) available to her students. So, that is encouraging. We sell our books at UC Hastings, but, it would be great to get into a local law school bookstore as that would translate to more bar students locally.

Anyway, I have been afraid to cal her back for fear I will fall asleep mid sentence. I will call back soon, I just have to make certain that I am awake enough first.

Let’s see, no real other updates. Just impatiently waiting to be recovered from surgery. I am very bored (probably a good sign as last week I was in too much pain to be bored).

I can’t wait to see the specialist up at UCLA so I can find out more about how I really am doing. I think well. But, Dr. Hurvitz is the oncologist I really trust (she is the one up at UCLA). Plus, I just trust UCLA in general. They developed Herceptin and have treated far more women with my type of cancer I think than anywhere else. So, I feel much more confident in their abilities and knowledge.

My main complaint right now is the heat. I wish it would cool way down. It is pretty tough for me to be outside except in the early am or after dark. So please say some prayers for me and for the weather to cool down a bit 🙂

I know, I know, not supposed to be typing . . . bad patient!

30 Aug

But, I just had to let you all know that I am feeling a lot better tonight (probably because I wasn’t typing 🙂 or over doing it in general). I rested a lot and a dear friend looked after me all day. Finally, my parents get a break, they have been here every day, my Mom has stayed with me every night. So, now she gets a break and so does my Dad. I am so grateful for their love, support and for being so smart! I am so lucky to have them as parents.

I had the energy to go out to dinner with some friends for a girl friends birthday. I put on a dress, make up, the whole deal. It was great to be out for a little bit.

Now I am going to bed and plan to spend most of tomorrow in bed as well (it proved to be the best route for today).

Please keep me in your prayers.

Love to you all,

Lisa

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

Another day of arguing with my oncologist

21 Aug

This time I “won”. I will be getting Herceptin on Monday. Still, I have missed over three weeks of Herceptin treatments simply because I have a jerk of an oncologist. you can read more about my earlier trials with this man from prior postings. My hands still hurt quite a bit and I am basically hunting and pecking rt now, so this will be somewhat brief. I don’t have the energy to get into just how I convinced my oncologist to let me have the life saving drug Herceptin this Monday (rather than continue to wait weeks longer for it). But, let’s just say that I decided to no longer even attempt to be pleasant or appear deferential to his “expertise”. Instead, I told his PA that if he didn’t call me back today that I would be leaving and that he would never hear the end of me, that I would tell my story every where I had an opportunity to do so and that my first audience would be every board member for the the Women’s Breast Care Center and Women’s Pavillion at Hoag and that I would be sending it via certified mail tomorrow along with emailed copies.

He called me back for the very first time ever. I told him I had nearly lost one month out of the 12 months of Herceptin treatments that are standard protocol for treating my cancer. I asked him why he did not agree with the rest of the world (UCLA in particular). He says now that he does agree with them, but he was just being “cautious”.

Again, he “went over my case with me” and in doing so was completely wrong – wrong on the pathology report, wrong on how much  chemotherapy I had been through and even wrong on one of the chemo drugs I had been given. This is what I have to deal with on a day when I should have been in bed all day.  I have never been so physically exhausted.

Anyway. some progress has been made. I still do not have any confidence in my oncologist and I still MUST find a new one. But, I want to keep my surgeons, especially my reconstruction surgeon. Amazing. I can not believe how well the surgery went. The reconstruction surgeon came in after my first surgeon (also excellent) performed the mastectomy. So as soon as one side was completed (mastectomy-wise) my reconstruction surgeon came in and worked on one side and then moved to the next. The total procedure (with both surgeons) was 6 1/2 hours.

Well today, I got to see the incision and it was incredible, I am absolutely amazed at what they did. I knew they were good and I knew that my reconstruction surgeon was one of the best in the country, but still, I am amazed.  And, she isn’t even done yet (there are a few steps I need to go through). My reconstruction surgeon was very pleased with the healing so far and believes there will be no scarring. In any case, it is truly amazing. The advances made in just the past few years are truly remarkable. So, on that end, I feel very blessed.

Just have to find a new oncologist.

There is a possibility that I will be allowed to switch for just the oncology portion of my care to UCLA and stay for the reconstruction part of my care (and surgical follow ups) with Hoag. I have to file a grievance and go through a formal process through which hopefully will result in my insurance company agreeing that I can split up my care in this fashion. I hope so. Please say some prayers for me on this, I really, really hope it will work out.

Well, I am pretty spent right now. I am doing better, but today was a bit of set back physically and emotionally and pain wise simply because I had to deal with my oncologist. But, I am now going to bed. My Mom is here staying the night with me – which I so appreciate. So, I should get a decent amount of sleep tonight.

Love to you all and please continue to keep me and my family in your prayers.