Archive | September, 2010

Pinktober – Breast Cancer Awareness Month . . .

18 Sep
In Finland the October the 3th is the day of s...

Maybe I should wear this to the Race for the Cure ๐Ÿ˜‰

Breast Cancer Awareness Month

Pink

It is nearly Pinktober. October is breast cancer awareness month. I will be recuperating from surgery during the month of October, so I will have less exposure to pink ๐Ÿ™‚ You start to resent the color pink after a while . . . especially since it is virtually everywhere. Pink. How did that become the color of breast cancer? Pink flesh? Pink disease? Pink, pink, pink, pink, pink.

Well, I did wear a pink t-shirt to many chemo and Herceptin rounds. But, I wore that shirt because it had, in very bold, large, black letters the word “FIERCE”. I loved that shirt. It is faded now, having been through the wash many times and worn many times . . . to chemo, to the gym and sometimes to bed. It was as if wearing that word across my chest (and for a good part of the year . . . across no chest) could influence the battle beneath. Fierce. I could make myself fierce even if I did not feel that way, I could make my cells within my body wage the war I needed waged and conquer the cancer.

So, I wore that shirt in spite of it being pink. I will be at the race for the cure next Sunday. (I say “at” now because of recent complications that make it pretty difficult to get around – my right side is pretty messed up – I will explain infra).

There will be lots and lots of pink there. I am going with a group of girlfriends who are all going to be wearing pink. I kind of want to wear chartreuse green to the event. Seriously, from head to toe . . . chartreuse. Why not? I would get some funny stares. It is funny, women with breast cancer either love it or hate it (at least that is what I see from my view) . . . love or hate pink, that is.

So about my not being able to walk in the Race for the Cure . . . today I was told to be still for the rest of the weekend. I mentioned that I have been having some pain on my right side. I thought that maybe it was lymphedema. But, now after speaking with a nurse who specializes in lymphedema and then a surgeon up at Cedars Sinai, it seems clear that the pain is probably not from lymphedema. So, that is a good thing as I really want to get through this cancer nonsense without having to contend with lymphedema . . . at least if it is possible for me to do so.

It appears instead that the pain I am experiencing is likely due to my pectoral muscle tearing. The expander is placed underneath the pectoral muscle (ultimately an implant will replace the expander . . . in addition, I will have muscle and skin brought to the area as well). The surgeon explained to me how a tear can happen and that it would cause me to have pain using my arm since the pectoral muscle is connected to the shoulder . . . any movement of my arm then causes that torn area to hurt. Anyway, she wants to see me on Monday. My surgeon is out of town (I am scheduled to see him for my pre-op appointment on Thursday of next week). However, his associate does not want me to wait that long. She gave me instructions to be still for the rest of the weekend to see if I can get through the next couple of days until I can get into see her on Monday. She put me on an antibiotic as a precaution (said there is too much at stake to take any chances right now). I appreciate her attitude and concern. It is a little disturbing. I had no idea what was going on . . . I should have called her a few days ago, but, I just thought it would get better and instead, it got worse.

She wants me to call her if the pain increases over the weekend and if it does she will have me come into see her . . . presumably to take out more fluid from the expander so as to alleviate the pressure there. But, I am not sure really. And, there is also the possibility that they will see me on Monday and decide surgery needs to happen earlier. God, I hope not. But, that is not really something I am going to worry about. I just really, really want Dr. Sherman to do the surgery. So I need to hang in there until he returns. So, no moving around this weekend at all. Of course my plans of doing laundry this weekend are completely out of the question. Oh well.

Keep me in your prayers, I greatly appreciate it. I think things will be fine. I am glad to know that this is not likely a lymphedema issue. Although, hopefully the muscle tear is not something that will be a problem. I think it will be fine. Mostly, I think she is worried about preventing an infection. I am very glad that she is so pro-active and concerned. And, she took a lot of time with me on the phone. She asked a lot of questions and then seemed to be able to discern what was going on, explaining it in a lot of detail. I liked that very much. It is such a relief to have a great surgical team. I am so happy about the switch to Cedars Sinai.

Love and peace,

Lisa

Pity party coming to an end :)

17 Sep

Regarding my previous post: Yeah, well, I thought I might regret blogging after four am . . . ugh. Delete, delete, delete . . . ๐Ÿ™‚

This week has been rough I guess. I don’t do well with the whole pain and physical limitations thing. I am definitely not good at that at all. Add no sleep on top of that and it is prescription for a very bad mood, and, apparently, feeling sorry for myself. Let the pity party begin, I guess ๐Ÿ™‚

No. I am here, I am not dead and I AM getting my life back. It is funny though, how sometimes I am simply overtaken with a sense of mourning over this whole thing. Most days are not like that at all. Maybe it is the headaches I have been having the past couple of weeks straight. Headaches are scary. Prolonged headaches mean scans and scans mean waiting for someone to tell you everything is okay . . . or, God forbid, everything is not okay.

So, once I get a headache it is very easy to have it linger for days and days . . . simply the worry of what that headache means can give you a headache . . . do you see how ridiculous it can get? Ugh.

So, I got a couple of hours of sleep this morning. Not enough. But, tonight I will definitely get some sleep. Melatonin here I come. And, maybe something for the pain that keeps me awake. I hate taking pills. But . . . I need to sleep.

So today I am going to try to get into see a doctor about my right side and arm. I am wondering if it is lymphedema perhaps. I hope not. But, it kind of seems like it could be. And, to think I might have caused this by going for a run a few days ago and continuing to run even after it was hurting. The running thing, it is very compelling . . . it is one of the things that when I can do it, it makes me feel well again, makes me feel like I am not sick, wasn’t ever sick . . . so it is something that I feel I need to do if I can. But, I think I did it when I should not have . . . the timing works out that way . . . I have been in pain ever since I ran . . . so, probably should not have done that. I don’t know what I was thinking, I could have just gone to the gym and rode a stationery bike and avoided having any impact at all.

Well, things will get better I am sure. Things are already getting better . . . I am one day closer to getting to surgery. YAY! ๐Ÿ™‚

Love and peace,

Lisa

Patchwork-quilt-of-a-breast keeping me up . . .

17 Sep

Well, here I am . . . again, no sleep. It is after 4:30 in the morning. It has been a year and a half of no sleep, really. I am quite tired of it. I am at half speed, half brain and half energy. Surgery is coming up in a matter of days now and I am not ready. Yet, if my surgeon told me I could go for surgery tomorrow, I would do it, God, I want this over with. I am so done with all of it. And now, here we are in the middle of “pinktober” (October is breast cancer awareness month, so the pink is everywhere).

Pink is on everything now . . .

Don’t get me wrong. I am grateful to have had a kind of cancer that is popular, sympathetic etc., etc., etc. What I mean is that breast cancer gets most of the research dollars and most of the “awareness” attention and as a result there are many treatment options available for breast cancer patients. And, for the type I had, a targeted therapy – one that cures the type of breast cancer I had – that not long ago few ever survived.

But, but, but . . . I want my life back. I want the non-hijacked-by-cancer-life-I-had-before back. But, I know that is not going to happen. And so, I have, for the most part, accepted certain things. Last year they took body parts away. Now more than a year later, I am getting new parts. But . . . my body will never be the same, I will never feel the same and I will never be the same. I have one reconstructed breast (on my left side, the non-radiated side). I still feel that it is foreign. I still feel sharp jabs of pain in my back from where my latissimus muscle was taken from my back to my front to help “rebuild” me. I still feel that new “breast” move whenever I move my arm . . . it pulls my new “breast” to the left . . . I swear, I could probably do tricks. And as funny as that seems, it isn’t funny at all. I hate it sometimes. Mostly, I just sincerely dislike not feeling like myself and . . . I hate the constant physical reminders that I had cancer.

And now as I get closer to perhaps being done with all of this nonsense, I am faced with the realization that this is it . . . this is how I am feeling. I have done battle and there are scars and parts missing and movements I make everyday that remind me of what I have been through. I can’t open a car door the way I used to do it. I can still do it, but, I have to do it differently now and the annoying thing is that I always forget this and so my first attempt never works . . . I have to be reminded – by not being able to open a door – that I now have to do it a different way. That is what it is about now, I think, re-navigating, re-routing things. Everything really.

Maybe one day the new ways of getting things done will become hardwired into my brain and become second nature so that I won’t have to think about it, won’t have to try to do it the old way first (because that is what my body instinctively does) and simply have the new way hardwired into my brain.

The path is still shaping up for me. I am still figuring things out and I guess I just have to be okay with that.

I saw someone with his shirt off the other day . . . a friend changed his shirt in front of me at an outdoor barbecue (can’t say that I minded it one bit, but, that is a whole other story). But, when he joked with me that I should do the same, we both immediately realized how unfunny that joke was . . . he felt badly I am sure and I felt, well, just kind of sad. There will be no unscarred pretty version of me naked. That is not happening. And after this most recent mishap with my prior surgeon, what I can hope for is something that will resemble a breast when I am wearing clothes. And, I am grateful for the patch work breast that I will get. I am grateful for the surgeon I now have as I know that with him, whatever the result, it will be the very best that I can get at this point.

But, I am also terrified of it, terrified of seeing it and terrified of having anyone else ever see it. So what is a girl to do?

Sometimes a girl needs to cry a little. Damn. This is where the being single with breast cancer cuts kind of deep. Not to say that having a husband would have made this cancer roller coaster a bed of roses. So, really, I don’t even know what I am talking about. But, I guess I am talking about where to pick up my life after this . . . and whether or not anyone will want to pick it up with me. I do have someone in my life. But, what that will be like after more surgery and recovery . . . who is to say? And, whatever it is like, well, only part of me will be there when I am done. Does that make sense?

I am so, so tired. Sleep is so hard to come by these days. This might be one of those four am rambles that I regret. Hopefully not ๐Ÿ™‚

Love and peace,

Lisa

Pre-op Hop . . .

16 Sep

So, my surgery is on September 27th. I will no longer be uni-boob. For those of you who are just joining this extravaganza . . . please see the “About Me . . . ” page above for a little back ground. And, thank you for subscribing to my blog, it makes me feel good to know people are reading . . . especially with this next surgery coming up and the knowledge that I will be down for the count again for a little while . . . my blog and facebook will be my world for a while after surgery ๐Ÿ™‚

But, all is good and soon, soon, soon I will be back to my life!!!

A little over a year ago I had a bi-lateral mastectomy. And now, I am finally about to have the last major surgery to complete breast reconstructive surgery. It has been a long time coming and a lot of discomfort in between. I long for the day I can sleep on my side or stomach again . . . a few months from now maybe . . . woo-hoo!

I am walking in the Orange County Susan G. Komen Race for the Cure the day before my surgery. It should be a nice send off I think. I am so glad to be able to participate this year . . . this is my first year participating as a cancer survivor. In the past, I have run in my Aunt Anne’s memory. She died of breast cancer in 1994. I wish I could run it this year, but, that is not possible. Next year though.

If you are walking or running in the Orange County Race for the Cure and would like to join my team, please do, here is my link: (link disabled).ย Somewhere on my page you will see a “Join My Team” link. If you are already signed up for the race, I think you can easily join my team by clicking on that link.

I am with the Hope Wellness Center Team, #1336. Hope Wellness Center provides free support to cancer patients and their families. They are an amazing organization.

Well, today was a bit rough. Since the complications on my right side developed a few weeks ago, I have gone from being able to run a couple of miles, to having trouble driving and just getting around. I know that the surgery will fix a lot of this. But, in the mean time, my window for getting things done and being able to get out and about seems to have shrunk. I am in pain now pretty much most of the time. It is certainly not the worst pain I’ve had and in the scheme of things, it is really nothing. ย Hate to whine about it, it is just difficult to use my right arm right now. So, I’m not getting a lot of work done right now. My plans of getting things done around my place, prepping for surgery and recovery by making some food to freeze. grocery shopping, etc. and just day to day things one has to do . . . all foiled.

My big outing today was to drive to lunch (I wasn’t up to cooking anything) and then a stop at the post office. I came back wiped out . . . after having driven about two and a half miles. It is so weird to go from feeling fine to feeling a bit crippled (okay, that is a bit dramatic I guess, but, seriously, trying to cook right now is totally unrealistic . . . unless it is microwaveable). I know it will get better.

I just have stuff to do and I can’t seem to do it. It is frustrating. But, this next surgery will fix this problem. It is just temporary. And, who knows, maybe with some rest in the next few days, I will feel better.

The surgery date is really coming up on me quick. I still need to arrange for care takers while I recuperate, food to be brought in . . . all of that stuff. There is a lot to do. I hope to make some headway on this over the weekend.

Well, keep the prayers and positive vibes coming my way. I greatly appreciate it. And, thank you to those of you who have joined my team. It really helps the cause.

Much love,

Lisa

Wednesday . . .

14 Sep

In twelve days I will have surgery at Cedars Sinai. There is much to do, the usual pre-op hop that I get to do. I am hoping that this recovery will be quicker than previous recoveries. I just found out great news, the surgery is expected to take 2 to 3 hours . . . the last one took nearly 9 hours! So, I am very please to hear that my new surgeon is able to do the procedure in less time. I think that would have to lead to an easier recovery . . . I hope.

Today was busy. I had medical stuff to take care of and other things to tie up before surgery. Tomorrow is more of the same. I have had a good week. I am very anxious to get this surgery done. I am pretty uncomfortable and am really looking forward to getting the expander out and the skin that needs to be replaced, replaced. It is so uncomfortable.

I have had a headache for a week now, pretty much all day, everyday. I hope it goes away soon. If it doesn’t then my oncologist will make me go get a CT scan . . . ugh. I don’t want that to be necessary. I am thinking that the headache is from stress and lack of sleep and the Tamoxifen that I am taking, or maybe the fact that I started drinking coffee again (caffeine)?

It is the lot of cancer patients and survivors to worry about every ache. Sometimes I get that way and sometimes I don’t . . . sometimes it is almost like I haven’t had cancer . . . I look forward to more of those days.

Please keep up the prayers and positive vibes.

Love and peace,

Lisa

Good things, good news . . .

11 Sep

What a roller coaster indeed. Highs, lows, but, wow have there been highs. And I don’t mean the drug induced kind (but, yes, there have been a few of those too . . . I really can not stand the drugs that I have had to be on post surgery . . . this time, I will not be on narcotics . . . new surgeon, new approach, very happy about all of that, but, I digress).

I am so happy today, so very happy. Stuff hurts, stuff is hard to do and even typing causes some annoying jabs up my arm. Playing the piano is out, doing dishes is literally a pain. But, I am feeling good, feeling good mentally. I just feel good.

I am so lucky to be surrounded by such good friends and amazing family . . . both near and far. You all get me through these days and literally, quite literally, make the pain go away.

What an amazing thing.

So, happy Saturday to all of you. Your messages mean so much, your prayers and positive vibes . . . I appreciate it all so much.

Last night I watched most of the Stand up to Cancer telethon. It was hard to watch for me. I taped it, so I will perhaps watch the rest of it later. But, it was really hard to see all the faces of people going through treatment, to see the “in memory” pictures and to hear of the lives lost in terms of numbers. My God, it is staggering how many die each year, each day, each hour. And, quite frankly I don’t need to hear about it, not one bit. So, I turned it off, despite my interest in the music. Of course, I am encouraged to see the new collaboration . . . a possible end to competition (sorry, I don’t really believe that is ever going to end, but) between researchers to be the one to discover x or y or z. But, it IS a good start. It is so, so important to bring these minds together, to share their knowledge and ideas so that a more complete picture can be had and hopefully, one day a cure.

There are so many different mechanisms involved in cancer and so much of it is not understood. I think the hardest thing to hear last night was that chemotherapy (what is known as “traditional therapy”) is like nuking a house in order to turn off a light switch . . . and that the key is to find the switches . . . to develop and use targeted therapies. I know this is true. The kind of cancer I had was once always, always deadly, no one survived this form of breast cancer. Not until Herceptin was developed. Still, even though Herceptin works, seems to work, the protocol is still to also do the traditional therapy, high dose chemotherapy. No one, as of yet, has treated Her2+ cancer with the targeted therapy alone. However, there is the thought that it could be done one day.

It was hard to hear about my body having been nuked ๐Ÿ™‚ It was nuked, I still feel the repercussions of that and I wonder if there will ever be a day when I will not. But, I don’tย  care. The race for a cure, it truly is now, I believe, a race. I think it is now, for the first time, a true race. Stand up to Cancer is such a great organization. They are changing the way cancer research is done.

There are no 20 plus year survivors for me to look to for the kind of breast cancer I had because the drug that now makes it possible to survive – to be cured – was only approved for use in early stage breast cancer in 2005. It is some times difficult thinking about that . . . that we don’t have any long term survivors. But, every indication is that there will be women who were Her2+ who are cured and living a normal life span. And, there is every indication that I will be one of them.

I found out some incredible, just wonderful news yesterday. A friend of mine is now 15 months NED . . . meaning “no evidence of disease”. She was diagnosed with stage IV lung cancer just a few days after I was diagnosed. She is 35 years old, is married and has three beautiful, young boys. She is a biologist; a bright and beautiful woman. She never smoked and lived healthy. Suddenly one day she had a seizure . . . the seizure was caused by a brain tumor, the brain tumor was from lung cancer that had spread to her brain . . . so, stage IV, metastatic lung cancer.

When we met, she had little hope. Very little hope. But, she persevered and went from specialist to specialist and persisted and certainly used her biology degree. She was put on a targeted therapy (similar to the kind I was on) and she now appears to be cancer free – the technical term is: no evidence of disease: NED. That is as good as it gets. She has been on the drug for as long as I have known her and for 15 months she has been NED! How remarkable is that? I am so, so happy for her, for her family.

She continues to see specialists and to fight her cancer . . . that is her lot now. But, her doctors are talking about the advances there will be in ten years and how she will be able to take advantage of those advances . . . amazing. This is a diagnosis that just a few years ago would have been most certainly terminal, months to live kind of thing. Isn’t it amazing?

I know her life is, and will be forever, hijacked by this disease because that is how it is with stage IV or with a type of cancer that has never really been cured before. But, she is living and being a mother to her three boys and a wife to her husband and a cancer advocate for lung cancer patients (a type of cancer that does not get nearly the attention of other types of cancer in terms of research dollars). I am positive that she will be someone who helps save lives. How wonderful. Mostly, I am just so glad that my friend is doing so well. What a gift.

Love and peace,

Lisa

Oncologist Appointment, Pre-Surgery Jitters, Scans, etc. . . .

9 Sep

I saw my oncologist today at UCLA. She wants me to have scans again. I wasn’t exactly expecting that. My friend took me up to UCLA and came in with me to my appointment (more for her curiosity and just seeing what it is like to see a cancer doctor . . . it is kind of interesting I suppose . . . I mean the facility is quite impressive and when you walk through the door between the waiting area and where patients are seen . . . well, you get a glimpse into why it is that UCLA is one of the top cancer facilities in the country/world, etc.).

Scans again. I wasn’t sure about mentioning that here . . . but, one friend knows and I acted (in front of my friend) like it was no big deal . . . even though it is a big deal as it means that my oncologist feels there is enough of a risk that it is worth checking it out. The last time I saw her, she said she didn’t want to expose me to the radiation . . . since she considers me “cured”. It doesn’t mean that I am not cured.

But, she just got back from a major conference (a huge advantage of having her as my oncologist, she is truly a world leader in cancer treatment, and, she cares about me) ย and I think that the conference has influenced her thoughts on my case . . . so . . . more scans again. She said “Just because of your risk with, you know, being Her2+” and that “there are so many more treatment options now if there is a recurrence” but, “only if it is caught very early on” . . . So, I guess it is good, it was just a bit sobering. And, like I said, I wasn’t sure that I wanted to mention it here. But, I want the prayers that I know will come from those of you who read my blog and who pray and send positive vibes my way.

Statistically, I have a 50% chance of having a recurrence. BUT, my oncologist has always felt that I have less of a chance of having a recurrence because of my over all health, the diet I follow and the treatment that I chose to undergo (bilateral mastectomy – one side being prophylactic and not “necessary” and going through the radiation treatment). The 50% statistic does not take into account my age, health or dietary measures. It does take into account the Tamoxifen (which I am having difficulty taking/tolerating and because of complications the past several months, have been unable to take consistently). But, I will just do it and get it in my body and deal with the consequences.

Today was a bit of a wake up call . . . get back on my diet (which I have allowed to slack a bit the past few months) and get as much exercise as possible.

So, scans again . . . I thought I was done with all of that. It is a bit scary, and very much so for my parents, but, I had to tell them. And, now I am telling you ๐Ÿ™‚

I think my oncologist is likely just being cautious and aggressive . . . which is what I want . . . not what I had early on in this drama with the “butt-head” oncologist who could not keep my diagnosis straight and confused me with other patients.

Please keep me in your prayers and keep sending positive thoughts my way.

Much love,

Lisa

Thursday . . . GRATEFUL . . .

9 Sep

Today I have an appointment with my oncologist, Dr. Hurvitz, up at UCLA. My friend is driving me up there . . . thankfully, as there is no way I could make the drive myself now. And, to think I thought a few weeks ago, I was going to take my nephew to Disneyland sometime before my surgery . . . right. Well, there is time for that later. I wish I could keep my promise to take him this month, but, we will just have to try to go in November.

I am pretty uncomfortable these days. Movement in my right arm is much more limited now. It is painful to drive, painful to do a lot of things and quite uncomfortable to try to sleep. Not that it has really been comfortable sleeping for the past year. Ever since the mastectomy and the placement of expanders, I have not been able to sleep on my side or stomach . . . can only sleep on my back. Compared to the big stuff, it is nothing. But, I can not wait until the day I can sleep on my side or stomach again. Especially now, since sleeping on my back is uncomfortable right now since my right arm will not lay flat . . . if that makes sense. The pectoral muscle on my right side (which was radiated, along with my skin and chest wall) is so tight that I can not straighten out my shoulder or arm. It has been like this to some degree for a while. However, now it is quite a bit worse.

I am not sure what that is about . . . the fact that it is so much worse right now. But, I sure hope it will improve after the surgery. I would think that it would improve since there will be new muscle and new skin brought to the area. I believe it is the muscle (that continually shrinks and tightens up since the radiation) that is to blame for the limited movement in my shoulder and arm. However, the skin being replaced in some areas there ought to make a difference as well since the skin just isn’t good there anymore. It really hurts quite a bit. I don’t know exactly how much of this is surgeon error or simply a cost of the radiation. But, none of my friends who have had radiation are experiencing any of this . . . so I am thinking it is not normal.

Well, I KNOW it is not normal . . . one of the second opinions I sought a couple of weeks ago told me that he could not perform the repair type of surgery that I needed and said that there was only one person in Orange County that he would send his wife or daughter to if they were in my shoes. The other person he would be comfortable sending his wife or daughter to is the surgeon I have up at Cedars Sinai. I am so grateful to have this surgeon. At least I know that whatever the outcome, it is the best, given my circumstances, that I can get at this point.

I do believe that had I gone to this surgeon from the beginning that my outcome would be better, that I would not be going through this right now. But, that was not an option. I am only getting this surgeon, with all of his expertise, because my previous surgeon messed up (she just does not have enough experience dealing with radiated skin and as a result she did some things that should not have been done . . . some of that having caused permanent issues for me).

If I think about it in those terms . . . it is very upsetting . . . knowing that I now will have some kind of patch work/quilt kind of thing going on to make a breast on my right side . . . and all because skin was stretched to the point of killing it, making it no longer viable. But, I can’t think about it that way, I can’t really think about what could have been, especially when one really never knows what “what could have been” even means.

I could have been dead. That pretty much puts the whole thing in perspective. I could have been dead six months ago and never had any of the experiences that I have had in the past half year. I don’t mean to sound morbid. In fact, I mean to sound grateful . . . because that is what I am . . . simply grateful . . . grateful to be here . . . grateful for the time with my family and friends and grateful for new friends.

On March 6. 2009, the day I was diagnosed with this disease . . . I was sitting in my office, waiting for the call from my doctor with the results from a biopsy. A friend of mine was sitting with me. His wife, a breast cancer survivor, and many of his friends also breast cancer survivors. Once I got the bad news, he told me, “Lisa, this will be the worst year and a half or two years of your life. But, you will get through it, you will get through it.”

I remember thinking, how can that be? How can it be that it will be the “worst” period of time in my life. No. It won’t be.

Granted, chemotherapy was not fun, the mastectomy was not fun, radiation was no walk in the park and the year of Herceptin infusions was not a joy either. BUT, there were so, so many moments with joy. My summer of chemo and the daily visits from two children who walked my dog (Ben and Jessica – who by the way, also took out my trash, did dishes for me and mostly, just cheered me up . . . Ben filling me in on the latest baseball scores. or did I hear about that grand slam – “you know what a grand slam is, right?” “Yes, Ben”, with a smile, “I do.” ย And both telling me about the latest movie . . . if I recall correctly, they were gearing up for the latest Harry Potter movie . . . and just the details of just a normal summer in the life of an eleven and twelve year old).

And there was the day I felt like crab . . . a dear friend delivered a feast of crab. That was probably one of the most enjoyable meals of my life . . . when you haven’t been able to or wanted to eat and then suddenly there is something that sounds good to you . . . and someone finds it for you . . . at nearly midnight . . . well, you really enjoy it like never before.

There were family gatherings, times I will never forget, generosity of friends, gestures beyond gestures, my web designer (and now friend – although we have never met in person) running marathons in my honor, friends driving me, coordinating my transportation and care (staying over night with me during the chemo weekends), cooking for me, doing my laundry, doing everything I could not, cards and letters and books that arrived in the mail from family and friends and from friends of my friends and family (people I have never met, wishing me well) . . . and, my parents, what can I say about my parents . . . what can I not say . . . they are truly the most remarkable people I know. There was just love everywhere . . . so yeah, it was the “worst year and a half ever” . . . ๐Ÿ™‚ (Please insert sarcastic tone).

No, it was not easy and no it is not yet over. But, I am so grateful for so many things and for so many people. So as I sit here, contemplating (very little actually about it) my patchwork breast to be and the physical pain I am now in, I think back at everything I have been through and all of you who have literally pulled me through all of that and I am simply in awe, simply grateful and very happy to be . . . to be here.

Love and peace,

Lisa

Twenty days until surgery . . .

7 Sep

My surgery is twenty days from today. I am excited, in a weird way. I know there will be pain, although hopefully, much, much less than past surgeries (I have become known for having a difficult time recovering from surgery . . . longer hospital stays than expected, difficulties getting the pain under control, not eating for quite some time after surgery . . . in fact, I lost 14 pounds with the last surgery I had in May). Prior to the May surgery, I gained about 10 or 11 pounds, on purpose, knowing that I would lose some weight post-op. This time I have put on about 8 pounds (still a healthy weight, I am not overweight or underweight).

The last surgery it took about a week and a half before I ate any food at all and even then it was very limited. I think it has to do with the pain medications (narcotics) that they have put me on. Those always seem to make me pretty sick and I can’t eat or keep anything down.

I think things will be better this time. I hope so. My new surgeon up at Cedars Sinai tells me that he uses a non-narcotic pain reliever and that his patients do quite well with it. I hope to be one of those patients ๐Ÿ™‚ That would be great.

The worst part of the surgery last time was the pain and being so drugged up. I don’t like it. The drugs affect me quite a bit and I really suffer with taking these narcotic pain relievers. I am not a very big person and these drugs just seem to really wreak havoc on me. Chemo was much the same . . . not that one is expected to sail through chemo . . . but, I was very sensitive to the chemo meds whereas everyone else I saw in the chemo room was able to get through their infusion without having to stop the infusions during the day, get extra steroids, slow down the infusion rate (my chemo rounds took 7 to 9 hours each time . . . these were only supposed to take 3 to 4 hours . . . but, my body would just not tolerate the normal infusion rate). I have small veins and probably just a small system in general . . . there is something that is different because I definitely react to the “normal doses” of things in a less than normal way.

Anyway, I am feeling pretty good (still have pain in the area where my next surgery will be performed, but, that is to be expected).

I was pretty active this weekend, sort of. Went for a long walk in Newport yesterday, about two miles I think. Walked out on the pier. It was a beautiful day, windy, warm, but, not too warm . . . just beautiful. I walked with one of my best friends, it was really a nice afternoon.

Lots to do today. I have a lot to do before surgery. First thing though is to try to get in a walk or walk/run. I am heading down to the beach right now and hopefully will get in a little exercise.

Thank you for your continued prayers.

Love,

Lisa

Perspectives . . .

5 Sep

I had a good day today. It didn’t start out that way, but, it ended up being a good day. I woke up at the usual 6:30ish time (I wake up at this time whether I have been up until 4:00 am or have been fortunate enough to fall asleep earlier).

I was so incredibly tired today, kind of shocking really. I am not sure why, other than the recent anemia (recent blood work shows I am anemic again). So, that could be it. It is also fairly warm here and that can wear me out pretty good too.

Anyway, I stayed in bed a good portion of the day today, didn’t really move until I had to leave to go to a family friend’s memorial. It was a nice gathering and it was important. I was fond of Bill, our friend that passed away. It was so nice to meet his sister and nieces and to see some things I had never seen before. We swapped Bill stories and that was nice.

I can see the impact Bill’s passing has had on my parents. I hear it in their voice when I call them and I see it in their faces, especially today. Bill was a person my Mom saw daily, had coffee with often, spoke to every day. He was a support to both of my parents and was a support to me as well.

I am sad for my Mom and Dad, really sad. Bill was only in his fifties and his passing was just not expected. There is a real and palpable void there now for both of my parents. They really saw him virtually every day. I worry about them now.

Well, please keep my Mom and Dad in your prayers. I love them so much and hate to see them suffer . . . I have caused them (my illness has caused them) so much grief and suffering. And, now the loss of a good friend. I need to get well from this surgery fast so I can be of some help to them, instead of the burden I have been this past year plus. I know they don’t see me as a burden, but, I am, I have been and I just look forward to being able to be of some help to them. They are truly amazing human beings and I am so lucky to have them as my parents.

So, please say some prayers for my Mom and Dad, I would greatly appreciate it.

Love and peace,

Lisa