Archive | August, 2009

Just a short one . . .

30 Aug

Woke up in pain, but that is kind of the way this thing works I guess for me. But, then you eat a little bit, take a pain pill and things improve, at least that is how it seems to be going. I had backed off on the pain pills last week and my visiting nurse gave me quite a lecture about that. She said now is NOT the time to be cutting back on that. Still, the dosage my doctor gave me I think is way too high. I simply don’t weigh that much and if I were to follow her schedule, well, I would be half asleep and nauseous all the time. So, we have figured out a happy medium I think. I still take the medication, but spread it out over more hours. This seems to work for me and even enabled me to meet up for a short dinner with friends last night. Then it was back home, back to bed.

If it weren’t so darned hot outside, I could take walks or go to the beach, but it is just blazing hot here in Orange County. It has been in the 90s and that is just way too hot for me to be out in. I look forward to cooler times soon.

I am improving every day. I am still exhausted and still limited in what I can do. But, considering what I have been through – 2 1/2 months of chemo and major surgery, I think I am doing pretty darn well – and my doctors think so too. They have told me I just need to be more patient and give myself time to heal.

Okay, I am going back to bed now: rest, rest, rest, rest, rest, rest, rest!

I can’t wait to be able to go swimming, ride my bike – if I ever get it back (long story, probably just have to buy a new one), when I am up to riding it again – which I think will be maybe three weeks or so, and just being able to resume normal, fun things.

Please, please, please keep up with the prayers – they are working!

Love to you all, Lisa

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 ūüôā 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

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 Рyeah!!!) 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 Рso 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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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.

My Molly

20 Aug

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MollyDog

Holy Crap!

20 Aug

Pain, pain go away. Don’t come back another day.