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Don’t make me laugh . . . just kidding . . . :)

9 Aug

I saw my breast reconstruction surgeon today – she expanded my right side again – this was the third expansion.

I have felt better, that is for sure, but, I have also felt a lot worse . . . so, in the scheme of things it is okay. I am hoping I will feel better tomorrow. I have a lot of work to get done tomorrow. So we shall see how that goes.

I am really anxious to see my other surgeon, Dr. Coleman, this Thursday. I really want her input on what is happening with the right side. It is painful and I think that is normal. But, I am not so sure that everything else I am feeling is normal. There is a lot of pressure with the expansion (each one is progressively more stretching and more painful). I would imagine that is also normal. But, today there was a lot more pressure on my rib cage/chest wall. So much so that it hurts to cough, take a deep breath or laugh . . . please don’t make me laugh right now 🙂 The most difficult part right now is getting up from bed. It is very hard to get up right now as the expanded expander seems to push in pretty deep into my chest. Oh well.

Ugh.

Dr. Coleman sees so many patients who go through this process. So, I am really looking forward to seeing her this week. Hopefully my appointment will go well and I will get her thoughts (and hopefully reassurance) on how the right side is coming along. I am definitely nervous about the right side.

The surgery on the right is the same as the surgery on the left (the surgery I had on May 19th). But, it is not the same in that my right side is different after the radiation . . . my pectoral muscle and skin and chest wall were radiated. How that plays out in terms of reconstruction varies from person to person. As far as I know, I got through the radiation pretty well. My skin got pretty red and burned, and it burned right through to my back. But, it also seemed to heal quite well. So, hopefully, that will mean that things will work out well. I am confident that I will ultimately be happy with the results. I think. It is just getting there that I am worried about . . . the process.

Starting to feel a little better now . . . or . . . just getting used to it more.

Love and peace,

Lisa

Looking forward, no more pity party . . .

5 Aug

I got a bit of a lecture today from a friend of mine – you know who you are . . . and, no, I am not outing you on here . . . I keep my promises 🙂

So, the lecture was about how I apparently do not ask for help and do not accept help well . . . hmmm.

It was complete with examples . . .

So . . . I couldn’t really weasel my way out of that one . . . examples, dang, she’s good. 🙂

And she is not the first person close to me who has commented on my apparent inability to ask for help. I almost try to talk friends and family out of helping me . . . what is up with that? 🙂 Well, I am going to do my best to get over that.

I am also OVER worrying about my next surgery.

I have been feeling really anxious about this surgery for some reason. I was a bit anxious about the last one too. But, this time I know what I am getting into, so to speak. And, I guess knowing with some certainty that I will be in pain for a bit and unable to do things for myself for a bit, has really made me nervous. But, the reality is that I do know what I am getting into and that is good. I kept a log of how long I needed pain meds for the last surgery, how long I needed someone staying with me full time, round the clock and how soon I was able to do things on my own. And, really, in the scheme of things, it just isn’t that bad. Yes, there was some pretty intense pain, but, it did go away. And, now I have a better idea of how long that might take . . . except that I am planning for a quicker recovery this time.

And when I say planning, I mean that I am planning on needed as much help as before (so it will be arranged for) but, planning on feeling better and recovering sooner than before. Why not? Part of what made the last surgery hard was that I didn’t have any idea when the pain was going to stop. This time, I know that not only will the pain stop, but, that it won’t take forever for it to stop. I think that makes it so much easier. I am healthier than I have been in a long time, stronger . . . and, so, I think it is reasonable to expect that I will recover more quickly . . . that is the plan anyway.

In the past few months I have finally begun to get back to my life and it has been really good. Especially this past month. I have experienced a lot of joy in the past couple of years, a lot of that since the cancer and even during treatment. As I look back to over a year ago when I was going through chemotherapy and was in the throws of treatment and all of the side effects, I was truly happy on most days . . . I remember feeling empowered and I remembered the sense that I was really doing battle.

Somehow, though, I think I have been seeing this next surgery as something that could potentially jeopardize that joy. But, I realize that this will only happen if I let it. I obviously can not control how others will react to my convalescence. But, I can choose, as I have in the past, to see this as just one more step towards regaining the rest of my life and getting back on track.

There has been so much progress. Yet, I have . . . I hate to admit . . . been feeling a bit sorry for myself lately and a little fearful . . . thinking about this upcoming surgery as yet another “cancer hijacking” . . . when really, it is instead a new beginning.

I have friends who are still battling this disease, are still fighting with every ounce of their being to hear the words that I have already heard . . . cured. And, I have friends who are fighting, battling to get back to a state of remission. I am fortunate. And, I am blessed to have so many wonderful people in my life who love and care for me. It is difficult to have to rely on so many for so much. And, as my friend pointed out, I guess I am not especially good at it 🙂 But, someone recently has helped me get a lot better at accepting help.

So . . . I am over it, over the fact that yes, I will suffer some more with this next surgery.  I am moving onto reconstruction junction with a smile on my face and the knowledge that it will all work out and that those who love and care for me will be there for me . . . and, yes, I will learn to be better at accepting help 🙂

Thank you all for your love and support . . . it has meant, and does mean, so much.

Love and peace,

Lisa

This time last year . . .

4 Aug

This time last year I was just about to have my first surgery, a bi-lateral mastectomy. It seems so, so long ago. And, somehow, at the same time it is like it was yesterday. I can so vividly remember taking that last shower before surgery, washing my body with a special blue antiseptic soap that my surgeon asked me to use to help prevent infection. I will never forget that last shower, watching the bright blue soap run down my body and wash down the drain and thinking “this is the last time I will shower in this body.” I remember sobbing uncontrollably in the shower and even thinking of it now brings those tears right back. And I remember never feeling more alone in my life.

I remember knowing ahead of time that I would cry in the shower. Weird. I played it through my head before hand, like it was part of a movie script or something. But, as much as I had imagined it . . . when I took that shower . . . I was completely overcome with feelings I had not imagined, feelings of grief and sorrow and yes, some self pity and fear, but, mostly, just sorrow. I had imagined crying, but, I had not imagined how I would feel.

When I picture that time I am overcome again . . . here I am typing and crying . . . it has a way of sneaking up on you sometimes. 🙂 Usually, it is when I am alone. But, sometimes it will hit me when I am not alone, maybe I am a passenger in a car – not alone – yet, alone in my thoughts for a bit . . . and I am struck with it and then the trick is to disguise it in some way.

I guess it is good to cry about it once in a while. After all, I think there has just been a numbness about it for this past year. And, there is/was/is the need to just be okay for everyone. That has been a big part of being numb, not letting myself go “there” . . . where ever there is . . .

I guess I could call it the big fake out . . . 🙂 But, it is that fake out that has probably made it possible for me to get to where I am . . . so . . . that is good then. Still, it sneaks up on me sometimes.

I am okay though. But, it is hard now as I approach this next surgery. If I knew then what I know now, I am not sure I would be doing this. I guess it will all turn out. But, I am still not used to this new body and I wonder if I every really will be. I worry about taking the muscle out the right side of my back . . . not that I have a choice in the matter. But, I worry about it, about losing more feeling than I have already lost. It is surreal to willingly go through these things . . . for what, I wonder?

No one ever proposes the idea that maybe you don’t want to have reconstruction. Everyone, every doctor, surgeon etc., just assumes that it is what you, and what all women, want . . . to have replacement breasts. I just don’t know about that. If I could do it without losing physical agility, strength, then I probably would have no hesitation. But, I have not regained my pre-surgery use of my arms or strength.

I hear it takes a year or more for the tightness from this kind of surgery to go away. So, I guess I need to give it time. But, patience has not been one of my virtues lately. It was good, I think, to be very impatient with cancer. But, maybe not so good to be so impatient with this part of things.

Well, enough complaining. I have to get back to work!

Love and peace,

Lisa

Saw my surgeon today . . .

15 Jul

Today I saw my reconstructive surgeon. She believes that there is no damage to my implant from the accident. Fortunately, I was far enough out from surgery, healed enough, that the accident didn’t have a bad impact (no pun intended). I am still pretty sore and it definitely caused soreness around the areas where muscle was taken from my back and moved to the front (places that had been painful after surgery, but, had since felt fine, now hurt again . . . but, the good news is that my surgeon is not concerned about that, she says that everything looks fine).

The meeting went well, she was pleased with how everything is healing (scar wise, etc.).

We discussed a possible surgery date of September 9th, although, she told me not to get attached to that date as she would have to see if it was available or not. I sure hope it is. I desperately need to get back to work and can only do so if I am healed up from this next surgery in time for the next bar round . . . I fully intend to work the next bar round. So, if I can not get the surgery date by the middle of September (or, maybe even a little further into September), then I will have to postpone surgery for March of 2011.

I really do not want to postpone. BUT, I am not going to sit out another busy season.

Today I was able to make progress on a book I am working on. So that was good. It is slow, but, at least I am beginning to be able to do something with this brain of mine . . . besides cutting fingers and crashing cars . . . ugh.

Last weekend I got to see my friend Janice. She was visiting her son in San Diego and made the trip North to Orange County so that we were able to have a visit. It was great to see her and her son. We grew up together and I always thought of her as a sister. I will post some pictures from our visit soon.

Oh, the other update from my doctor’s visit is that my surgeon will start the expansion process this coming Monday . . . of course I have no car to drive now, but, will figure that out somehow . . .

I will go in every week for an expansion (saline injected into my expander in my right side of my chest). I have not had this done on the radiated side . . . not since I was radiated. I was expanded before radiation, but, then had to be deflated. So, now we start all over again, but, with radiated skin. There is no way to know right now how I will do with that. It is a bit painful and gets uncomfortable . . . changes my mobility in my right arm . . . but, it should go fine. It better, as I have two gigs coming up in a couple of weeks . . . need my arm to be working that bass!

Well, enough on all of that.

Please continue to keep me in your prayers . . . I thought by now I would not need it anymore, but, I was wrong . . . 🙂

Much love to all,

Lisa

Friday . . .

14 May

I saw my surgeon yesterday. She confirmed what will be happening on Monday. I will still have the reconstructive surgery on my left side. But, now will have the expander on the right side replaced. That means surgery on both sides. It is too bad that the expander did not last and ruptured. But, I am grateful that at least if it had to happen, it happened in time to have it dealt with in the same surgery on Monday. If it had ruptured a few weeks later, then I would have had to go in for another surgery just to take out the ruptured expander and put in a new one.

I was really glad that this surgery I would only have one side of my body involved – and so, only one arm limited post-op. But, now, since it involves both sides, it will mean both arms are affected like last time. That means no moving either arm for a bit and then just the recovery that is needed is needed for both. Bummer. I was looking forward to being able to do things for myself. Aaargh.

Still, I have to think that the recovery from this surgery is going to be much better, faster, easier, etc. than the last surgery. The last surgery was on the heals of chemotherapy which really had me dragging. I know I am much stronger now than I was back then.

Today I am trying to take care of everything that I can, phone calls, bills to pay, grocery shopping to do, cooking, cleaning and dealing with my idiotic landlord. It is pretty hard to do stuff right now as there is some significant pain from the broken expander. So, I am working at half speed . . . if that 🙂

I still do not have caretakers lined up – but, I hope to get that taken care of soon.

My brother Paul is going to drive me to the hospital on Monday – so grateful for that – as I have to be there at 5:00 am.

Well, wish me luck with everything and please continue to say prayers for me.

Love and peace,

Lisa

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

I am a post surgery sloth

26 Aug

I am recovering from surgery. It is very slow. Or, rather I  am very slow. Moving slow (the heat doesn’t help this at all). Typing is actually quite difficult for me (it hurts some what, and the accuracy, well forget it. So I try to type a message here and there but I end up having to retype, back space etc. and it takes so long and it hurts so there you are, I don’t do it much at all. But, here it has been several days and no post from me. So here goes. I will correct my typos, but, don’t expect perfection.

So, everything is slow. But, I am doing my best to get back to my normal self. I just don’t have any energy and I an very impatient (apparently). I saw one of my surgeons today, she told me – of course you’re tired, you’ve been through a lot and it takes longer to recover from surgery if you have it after chemotherapy. I did know this going in, but I guess I didn’t fully appreciate what “expect to take longer to recover” from surgery really meant.

So here is my my update (lots of details are coming, stop reading at any point if it becomes just too much detail).

Pain – still having it, but it is lessening some for certain. Although I expect (but hope I am wrong) there will be more pain this Thursday as my reconstruction surgeon will potentially “expand” my breasts (my “new” breasts). This is done with saline injected into what they call an expander and voila – more boob is present. The expanders (one on each side) were placed during surgery. On Thursday my reconstruction surgeon may expand me. This was already done during surgery – once the expanders were placed, my reconstruction surgeon expanded the expanders with saline. So when I came out of surgery I already had a chest, pretty unbelievable. But, she could only expand a little bit and wants to do this process slowly so as to cause less stress (and pain, I hope) to my skin. I hear the process usually only takes a few weeks to do. But, in my case, because I had chemotherapy prior to surgery, she wants to be extra cautious and allow my skin ample time to heal. Therefore, I will see her weekly until she reaches the size that she wants (or, I guess that I want).

What’s next after “expansion” reconstruction wise: These are called “expanders”, not implants. I will get breast implants in the future. But, first expanders are used to expand your muscle and skin (especially if you have to have radiation as radiation can cause your skin to shrink – isn’t that lovely). Well, if you expand prior to getting radiation treatment, then you can still have breast implants of a size that you want and not be limited by skin shrinking from radiation treatment. At a later date a procedure is done called an exchange procedure. This is where the expander is exchanged for a breast implant. So, I have a little ways to go. But, in the meantime, visually no one will be able to tell the difference between how the expander looks or how the implants look. So, that is a pretty nice thing that they are now able to do.

So, I am mixed about my meeting with my reconstruction surgeon on Thursday – it will be great to be able to proceed with the “expansion” and make progress that way. But, it will cause some pain. But, maybe it won’t be so bad, at least that is what I am hoping. In any case, it will be one step closer to being done.

Pathology Report

My pathology report came back about four days after surgery. The results were not what I had hoped. (I had hoped for what is called a “complete response” to the chemotherapy – meaning that when they performed the surgery the surgeons would simply be removing dead cancer). However, there was still cancer left in my breast and in my lymph nodes. But, it does appear that the chemotherapy did kill a lot of the cancer (shrunk it). It is so hard to know though as MRIs are only as accurate as they can be and really the only way to know what you have going on is for pathology of all of the tissue.

Because I ask a ton of questions I had asked the specialist up at UCLA what if I don’t have a complete response to the chemo (most don’t by the way) and she said, “Don’t worry about it, you’ll be on Herceptin”. She did say that depending upon the pathology report, she might decide to keep me on the Herceptin a little longer (it just would depend upon how much cancer was left after chemotherapy. So I am looking forward to seeing her. I faxed my pathology report to her today and expect to speak with her soon about the results. 

Good news about the pathology report (excellent, excellent new actually) is that they re-ran two tests that confirm my HER2+ status. Both tests reconfirmed that my tumor was (as it is gone, out of my body – yeah!!!) HER2+.  But, not only did both tests confirm this, there are levels of being positive and there are two different ways of being HER2+. To keep this whole explanation short (I am tire and so are my fingers) the point of it is that I am high (3 out of a potential 3). Herceptin tends to work best the higher your positivity is – so being the highest is a good thing. The other test confirmed that I have something else that will also improve the likely successfulness of Herceptin with my cancer.

So, the recap of the above, pathology confirmed that at surgery there was still cancer remaining, the active cancer was removed – so it is now gone and I tested well for Herceptin likely being a very successful continued therapy for me. But, I will know more about this when I speak with the specialist up at UCLA. (As established in my prior posts, I do not have a lot of confidence in my current oncologist and have been seeing a breast cancer surgical oncologist up at UCLA. I will ultimately switch to her, but have to time that right.

Meeting with Oncologist NOT looking forward to meeting with my current oncologist. He is the guy who doesn’t read my file/chart etc. and is simply not invested in my care. I spend my meetings with him correcting him and catching him up on what has been going on, what treatment I have had so far etc. (since he can’t seem to take the time to actually read my file, i have to to update him every time. I find this pretty discouraging. Plus, he doesn’t even remember basic information about my cancer and even confuses me in the meeting with other patients who have other types of cancers. I usually leave my meetings with him pretty down for the aforementioned reasons and for others not worth repeating here. So say please say some prayers for me that tomorrow’s meeting is not somehow a positive one.

Appointment with Specialist at UCLA

As I mentioned above, I faxed my pathology report up to the specialist at UCLA. (Actually, someone faxed it for me, that’s how slow, tired and weak I am these days – it is temporary though). I am quite anxious to hear what she has to say about it and how she thinks we should proceed. I trust her and can’t wait to have here as my regular oncologist.

Okay, here are some pictures and then I am off to bed. Please keep sending messages, either here, via email or on facebook (yes, I went “public”, at least in a limited way). I love the messages and need them. Until I am better, my replies will have to be here as I am just not up to writing too much. Thank you for your prayers, please keep the prayers coming my way! The following pictures were taken four days before surgery at a family gathering for my Dad’s 80th birthday.P1000863P1000871P1000825P1000865P1000815P1000818P1000849
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