Archive | September, 2010

At Cedars Sinai, blogging from my cell phone

29 Sep

I had surgery on Monday. Everything went well. The surgery took four hours . . . Less than half the time my last surgery took. I am recovering very well so far and expect to go home tomorrow.

I have seen my newly reconstructed breast. I am reserving judgment until things heal up. Although I am not unhappy at all with the work of my new surgeon . . . I think he did an excellent job. But, I am looking at what looks like a puzzle, literally, of my skin.

My left side will look like a breast . . .after tattooing, it will be virtually indistinguishable from a normal breast.

It is hard to imagine this result on my right side (the side that was just reconstructed). But, who knows. It is amazing that anything could be done, let alone actually achieving essentially the same size (my surgeon did achieve the size we were hoping to accomplish). So, maybe I will have this patchwork/puzzle piece look or maybe it will improve.

In any case, I am here and I am pretty much done with this reconstruction stuff. And, hopefully, done with the cancer for good.

I am really looking forward to going home tomorrow.

I have had excellent, excellent care here at Cedars Sinai. Here are a few pictures from my stay.

Thank you for your continued prayers and positive thoughts. I greatly appreciate it.

I will post pictures from my stay here at Cedars Sinai soon (I just tried to do it from my cell phone, but, apparently I can not upload photos from my phone . . . So, I will do it when I get home).

Much love,

Lisa

Surgery tomorrow, race for the cure today . . .

26 Sep

Hello All,

I have surgery tomorrow at 1:00 pm tomorrow. I am glad the day is finally nearly here. Although, there is still so much to do it seems. Oh well, what will get done, will get done and what does not get done, does not.

This morning I went to the Orange County Susan G. Komen Race for the Cure. I was not able to do the walk or run . . . next year I guess. But, it was nice to go and to see friends. There was a survivor ceremony, with speakers beforehand. It was nice, but, I have to say it was a little weird for me. I have been years ago, running it in honor of my Aunt Anne. This year, I am a “survivor”. Women were wearing beads – one strand for each year out from their breast cancer diagnosis. Some women had thirty strands. That is encouraging. I sat during the ceremony with three women, my friend Debbie, her mother and her cousin . . . all three have had breast cancer (Debbie has had it twice).

Anyway, it was great seeing Debbie and her family and friends.

I am glad that there is so much attention given to breast cancer. But, other cancers get less attention. The Orange County Race for the Cure is a huge event every year. This is the 19th year of the race in Orange County. I just wish there was an equivalent event/attention for other cancer types . . . October is breast cancer awareness month . . . “pinktober”.

Other cancers have a color too . . . for example . . . ovarian cancer is teal, uterine cancer is orange. But, no other cancer seems to be anywhere near as much on the radar (research and awareness wise) as breast cancer.

Maybe with organizations like Stand Up 2 Cancer, there will be more awareness, more research dollars. I don’t know.

Well, I have to get back to the rest of my pre-op hop. Here are some pictures from today’s festivities.

Please keep me in your prayers tomorrow, I greatly appreciate it.

Much love,

Lisa

P.S. A special thank you to my friend Sandy and to the generosity of her family and friends . . . Sandy raised $375.00 – that will pay for three mammograms! Thank you Sandy!!! (I stand corrected . . . Sandy has raised $400.00)!!! Thank you Sandy!

Cassi, Tiffany, me and Amber

Me and Dan . . . he ran the race, I sat out 🙂

Three amazing women! Sylvia, Debbie and her Mom

Me and Debbie, we went through chemo together last year.

Me and Sylvia

Me and my friend Lindsay

Survivor celebration . . . I am in here somewhere . . . 🙂

So happy to have heard from a friend of mine . . .

22 Sep

Last summer I met a lot of fellow cancer patients during my chemo rounds. My chemo rounds were on Thursdays, every 21 days. It packed a pretty powerful cancer killing punch . . . hence the 21 days in between. For the first six months or so I also had weekly Herceptin infusions. Then, after surgery I had Herceptin infusions every three weeks for the next six months. It gave me the opportunity to interact with many fellow cancer patients. Going every week for the first six months; I met so many people. Some came in for weekly chemo and some every three weeks (all on Thursdays). And, one of the really amazing things is that, for the most part, I only met the Thursday people (aside from those that were there getting chemo every day – most were weekly or every three weeks). So I only saw a fraction of the patients that came through there.

There was Cathy, who I met on my first day of chemo. We shared a room together. Little did I know on that day that her friendship would save my life. After meeting on my first day of chemo (Cathy and I visited the whole day) we decided to sit next to each other at our next chemo rounds and since I had to arrive so early for chemo rounds, I would usually get the semi-private, two bed room. Most of the time, the staff would save the other bed for when Cathy arrived. Usually it worked out for us to share the room.

Anyway, for more on how Cathy’s friendship saved my life, take a look at postings from the end of April 2009/beginning of May 2009 – I wrote about it then – how I went into anaphylactic shock, stopped breathing and was pretty much out of time, when Cathy’s daughter – who just happened to be visiting from San Francisco and who just happened to be an oncology nurse – walked into our room and discovered me – bright red, not breathing, not much time left –  she rushed to get medical staff and quite literally saved my life. I still shudder when I think about that day and the difference that seconds or even a minute would have made, had Cathy’s daughter Lisa walked in just a little bit later. Phew, close call.

But, I digress. My point really was that I met a lot of people in chemo.  Some I really get to know well. There is a particular bond that seems to develop, maybe it is a little like the bond that develops between those who are in combat together.

There was one woman I met who has been on my mind for some time. We met on her first chemo round (my third or fourth . . . so I was a seasoned – ha, ha, ha – cancer patient by then). She was getting the same drugs I was getting. From what I understand, they give you Taxotere as either a last line of defense – if your cancer is not responsive to other chemotherapies. Or, they give it to you if you have an aggressive form of cancer. This woman has inflammatory breast cancer. That is aggressive. It is different than the kind I had (which was also aggressive).

Her husband was with her that day. She had my nurse (Dawn, simply an angel, really) taking care of her that day . . . just like I did on my first day. Dawn seemed to take on all of the first time chemo patients, she was an amazing and very, very caring nurse to me. Anyway, this woman and I talked throughout that entire first day. She told me about her diagnosis, her two daughters, showed me pictures of her children (two very beautiful girls). We exchanged emails and corresponded for a little while and then I didn’t hear back from her. Anyway, you can imagine what I might have thought. Well, I just heard from her. She has had some real struggles, such a rough time. And, she is still going through chemo. I was so relieved to hear from her. I really enjoyed meeting her and it was meeting her, passing along some of my experience with the chemo her (she was, understandably worried about what the side affects were going to be etc.) that made me realize that I want to be involved in cancer support. I am not saying that I did much of anything for her. But, I so wanted to help her and I feel that I have to be involved in helping cancer patients. I do not yet know what form that will take, but, I know that it is something I want to do, I feel compelled to do it now.

I am so glad to hear from her and to know that she is fighting and getting treated. There is so much more now that can be done these days. Prayers are always good though, so, if you would, please send some her way for me.

I just received an email from her (so thrilled to hear from her). She told me of some of her struggles (hospitalizations and complications, that she is still going through chemotherapy). And, then at the end of her email she said, “I can’t complain”. Wow. Obviously, she could complain, no one would begrudge her that. But, my sense is that she truly doesn’t and that she lives joyfully for herself and for her family.

I hope to see her soon. I wish I had a little more time before my surgery. But, I am just so, so glad to hear from her.

Please keep my friend in your prayers.

Love and peace,

Lisa

Pre-op hop continues . . .

22 Sep

Yesterday was a good day . . . I got a lot done. All medical stuff. With Monday’s insurance caused fire drill, I wasn’t so sure I would be able to get what I need done prior to my surgery on Monday. If you have been following my blog the past few days, then you know that my insurance company initially refused to cover the surgery. My insurance company informed me of this on Monday – a week before my surgery date. Their reason for denial was that there is a “competent” surgeon within the network. Yet, it was my insurance company who sent me to Cedars Sinai in the first place, because that is where they send reconstructive patients who have problems (with their in network “competent” surgeons . . . ugh). So after seeing Dr. Sherman at Cedars Sinai who is one of few surgeons on the West Coast that has the expertise to fix my problem, I was told I had to go back to my first surgeon.

Incidentally, I saw three other plastic surgeons about this – all three out of pocket, by the way (and my pocket is pretty much empty right now :)). All three surgeons told me that I needed a different type of procedure for the radiated side – different than what my first surgeon was planning on doing. And, two of these surgeons told me that they could not perform the surgery because they were not trained in the technique. Dr. Sherman’s name came up repeatedly as “the guy”. Another local surgeon came up as well. But, my insurance has a relationship with Dr. Sherman (they contract with him in high risk, problem cases) so that is who they sent me too.

Anyway, the upshot of all of this is great . . . the surgery is back on (it was only off for one day, but, a whole day, that I lost to fighting with my insurance company, making my case and standing my ground). Like I said earlier, if nothing else, it was good to know that I still have the fight in me. You never know when you are going to need it.

So, one lost day . . . BUT, I got all of my pre-op testing done yesterday (SO happy about that). Today I have work to do – cleaning up my place, getting things organized for my recovery and hopefully arranging for caretakers. I slept last night for the first time in weeks and I feel energized . . . rest is such a good thing.

Tomorrow I have to get up to Cedars Sinai for my pre-op appointment with Dr. Sherman. Friday morning I have a pre-op appointment (and first meeting) with my new primary care physician. I am looking forward to meeting my new PCP as I have heard really good things about him.

I fired my last PCP doctor. I have fired a few doctors in the past couple of years. But, I refuse to have sub-standard health care . . . I dumped my last PCP doctor because her medical staff told me that I was just “too complicated” and that I asked doctor “too many questions” . . . they actually called me up and chewed me out over this – telling me in a fairly hostile tone, “Okay, this is how it is going to work from now on – you can only ask Dr. _____ about one issue” per appointment.

Welcome to healthcare USA.

They explained that she (my former PCP) can only afford to meet with me for 15 minutes, that is how long all of her appointments have to be in order for her to make money. The office staff then proceeded to give me a whole run down on how it costs money to run a business (as if I wouldn’t know this) and that I was, essentially, costing them too much money because I was too “complicated”. So their solution to this problem was to have me come in for two or three appointments in the same week . . . that way my doctor would get paid what she deserved . . . they actually admitted this to me . . . hysterical.

I told them that I wished more than anything that I was not so complicated, that I was sorry that my cancer diagnosis was creating so many problems for them, but, that I could not only not afford the time of two or three extra appointments in a week, but, that I could not financially afford to pay extra co-pays.

I asked them if they could recommend a doctor in my network who would not charge me a “cancer surcharge” . .  . ooh, did that one piss them off.

The other thing about this doc that really annoyed me was her insistence that I go on some kind of anti-depressant. “You seem depressed”, she told me, “I think you should go on an anti-depressant”. I told her that I preferred not to force yet another drug through my chemo-taxed liver; that I preferred to meditate, exercise, pray and diet my way to feeling better. And, I told her that I thought it was kind of normal to occasionally get a little down once in a while about having cancer.

Still, she recommended that I go on an anti-depressant, urged me to “at least think about it, don’t be so stubborn” . . .

So I thought about it. I researched the drug she recommended I go on and discovered it interacts with Tamoxifen in such a way to make it ineffective. I’m telling you, I have to check all of this stuff out myself. When I told my doc about this bad interaction she got angry with me. I guess I am not supposed to know anything or learn anything. Okay, sorry . . . enough ranting.

Today is Wednesday, one of the last days to get stuff done (since tomorrow will I will be up at Cedars Sinai and Friday I have to be in San Diego). There is Saturday . . . I am considering asking friends to come over and help me get my house ready . . . but, then my friends would see my mess 🙂 . . . a year and a half of cancer treatment and surgeries really gets in the way of keeping up on your home.

I am physically feeling a bit better, but, still really not in a position to lift much . . . the skin on my right side is paper thin in places (from the over-expansion, from the radiation and just because it is). So, when I use my right arm, it pulls that skin and poses a risk that the expander will tear more skin. It is really a creepy, creepy feeling. I can not express how grateful I am that surgery is this coming Monday. I am grateful for the time I have had leading up to surgery, but, I SO want this surgery over with and behind me . . . it is just so creepy and kind of scary to be walking around the way I am right now. But, all is good, really it is.

I just need to get my place in order. And, I need to get groceries and things like paper towels, napkins etc. . . . and I am completely broke. Isn’t that nice. I ran through so much money this past year (so grateful I had a bit socked away . . . I thought it was going to be “down payment on a house” money. But, instead it was “kicking cancer’s ass money” . . . well spent I think :)). My parents have helped me SO much – covering rent and so much else. And friends have helped me too.

I have stayed in my place, as my family and I agreed that this would be best for my getting well. I don’t know, maybe it would have made more sense to move in with a family member – it would have saved a lot of money. But, I didn’t. And, I am nearly done . . . nearly about to get off of this cancer roller coaster. Unfortunately, I ran out of money before the carnival ended . . . 🙂 ha, ha, ha . . . the “cancer carnival” . . . full of so much amusement, hijinks and hilarity 🙂

BUT, I am going back to work in a few months, who knows, maybe even sooner. I will be recovered in time, for the FIRST time in over a year, for my next busy season. I am SO excited about this.

And, I have a book that will be out in a few months, already pre-ordered by Hastings College of Law Bookstore (kinda excited about that). So, things WILL pick up on the money front. Unfortunately, not before my surgery on Monday.

But, these things will work out. I see this surgery as my gateway to my return to life, to work. Don’t get me wrong, it isn’t like I haven’t been living. I have. But, it is going to be so nice, so great, to be back to working. The last time I worked steadily was during chemo (of all things). But, after my mastectomy, it was one complication after another. I have no regrets about a penny that I spent on second opinions and specialists that my insurance would not cover. And, at least I am not in debt (yet) over this cancer nonsense. So, I have to be thankful for all of that.

Okay, time to get to work, the day is whipping by!

Love and peace,

Lisa

Insurance company makes good . . .

20 Sep

Phew, surgery is approved. It was a long day. Spent most of it on the phone, with a break in between to see a surgeon up at Cedars Sinai today. The surgeon is keeping me on an antibiotic until surgery, just as a precaution. She says it appears that there is a tear or rupture (she saw some blood beneath the skin, where the skin is the thinnest). So, no running prior to surgery . . . not that I need to be told that right now 🙂 The good news is that it doesn’t appear to be damaged any further since what ever happened when I went for a run happened to an area that already had to be “dealt” with . . . replaced. So, that is great news. And, great news that the surgery is now approved. Still, just didn’t need the fire drill . . . I used to go through these all the time last year, getting this or that approved . . . from something as simple as getting my insurance to pay for a standard anti-nausea drug (that was $495.00 for three pills . . . crazy, I know) to getting second opinions approved.

I guess it is good to know that I can slip right back into that warrior mode when needed.

Didn’t need the worry though . . . especially my family and friends did not need the worry . . . especially my Mom and Dad.

My Dad had a procedure today. It is supposed to be a minor procedure. I am waiting to hear how it went. Please say some prayers for my Dad that everything goes well.

Love and peace,

Lisa

P.S. Just found out that my Dad is just fine . . . a very good day after all!

The stupidity never ends . . .

20 Sep

My insurance company has not approved my surgery . . . the surgery that I am supposed to have one week from today. I am waiting to hear back – supposedly this afternoon – about it. I was told this morning that they will not approve it if they have a “competent” surgeon within the network  . . . and, it is their belief that my surgeon . . . the one who over-expanded me and caused permanent damage . . . is “competent”. They believe I should stay with her . . . can you believe this? I can not.

I told them that I will not, under any circumstance, go back to Dr. Z. No way! But, it is not up to me whether they authorize the surgery with Dr. Sherman. Welcome to healthcare, USA style.

Prayers are greatly appreciated.

Love and peace,

Lisa

Three days straight of no sleep . . . ugh

19 Sep

I was up all night last night. Not good. I sent my brother a text at 5:00 am (he often goes running early in the am) to see if he was available to chat. But, no such luck. The headache I have been having for several weeks is starting to really get on my nerves. I naturally have the worry that it isn’t just a headache . . . and that is just way too much sometimes. Last night/this morning was one of those times. I was fully prepared to ball my eyes out if my brother Steve called me back at 5:00 am. Fortunately, he did not return my call until a much more reasonable hour this am. And while I certainly can not say that I had my faculties about me, I definitely had control over my tear ducts at that time.

I know that my lack of sleep is probably contributing to my headaches and that the headache is contributing to my not sleeping. It is a cycle that has been hard for me to break. Plus, I do have some pre-surgery nerves right now. That probalby doesn’t help sleep come any easier.

Perhaps I will have better luck tonight. I think I am going to have a friend stay the night with me . . . I know, I am a big baby. But, maybe it will help.

Love and peace,

L.