cancerfree2b

Okay, a little embarrassed about this request, but, what the heck. Apparently, Oprah is offering a makeover to a breast or ovarian cancer survivor who is in her 30s or 40s.

I know it is a long shot, but, if you feel like writing in on my behalf, here is the link. Her show is looking for someone who is a survivor (I AM) and who does not feel herself anymore after her cancer experience (I have already had a “cancer makeover”, but, it would be pretty neat to have a real makeover).

There is more information on her site at the following link:  (that is if I have cut and past the link correctly :))

They don’t celebrate Memorial Day at the ER, I know, I was there all day today, just got home a little before 8 pm. After being poked and prodded and put through noisy cat scan machines – all of this is now pretty rote for me – I am home. I have to say that the part of this stuff I am not used to, nor do I think I will ever get used to, is the “find a vein in Lisa” game that we always have to play. Each time is a bit worse. Today was a tear jerker, never thought a simple IV would draw anything more than blood, but, now there are no simple IVs and IVs simply, painfully, draw tears. I can’t help it. They have to go in so deep.

Finally, on the third try, with a pic line specialist, who used an ultrasound to locate a vein, she got in. They have to go deep to find anything now – after chemo and a year of Herceptin treatments – there’s just not much left. And, small people happen to have smaller veins in the first place, so there I go.

Anyway, the third nurse was sane and instead of apologizing in advance for the pain she was going to inflict while trying to get the IV in (that’s what the first two nurses did – you just never really want to hear: “this is going to hurt a lot”), she said, “you’re going to feel some stinging, I’m using a pediatric needle to get you some lidocaine to numb your vein before we go in . . . ”

So, the third nurse was successful. And now, finally, I am back home.

I am waiting for my home care nurse to arrive to give me my at home antibiotic infusion. Going to try to eat before she gets here (the antibiotics somehow always ruin the tastebuds). Man, I am just all vinegar today, aren’t I?

I am grateful to be home. And grateful I am not in some war zone, lying wounded, without an ER in sight.

God bless our troups and let’s bring them all home!

Love and peace,

Lisa

I have not taken a pain pill since early this am. I am hoping to not take any this evening either, but, I don’t know about that. I sure don’t want to go backwards and have a horrible night. Still, the pain pills cause some problems, problems I would like to avoid (like nausea and well, other stuff, I will refrain from discussing at this dinner hour).

So, maybe I will be able to manage without the pills now . . . that is my hope.

I now have two classmates from my high school with whom I have been in contact that either have or had breast cancer. One of my former classmates was diagnosed with an aggressive form of breast cancer (invasive ductal carcinoma – my cancer was also invasive ductal carcinoma, in addition to being HER2 +). This young woman was in my same high school class. She was first diagnosed at 36 years of age and then diagnosed again a few years later, finished treatment in 2008. She just sent me a message, having come across news of my diagnosis online. (Incidentally, my other former class mate is actually just now going through cancer treatment, having been diagnosed with the exact cancer as I had – IDC – invasive ductal carcinoma, and HER2+ . . . that is pretty rare, the HER+ aspect, as that is far less common, especially in younger women).

The former class mate I just heard from is a two time survivor. I am glad to reconnect with her, but, so sorry for the reason.

Anyway, she is doing well now and in the pink, as we say.

🙂 I am so glad for her.

Love and peace,

Lisa

Well, thank God, the pain is lessening.

I can not comfortably sit or lay down which means very little sleep. I am sleeping for just a couple of hours each night, sometimes only an hour. It is pretty crazy in that regard. But, thankfully the lack of sleep now is not due to unbearable pain – the pain I have experienced since surgery has been so intense – two and three hour periods at a time of continuous stabbing pain. I have never experienced so much physical pain in my life. Just incredible. And, I am writing about it because I want to have it here for others – who might consider the type of reconstructive surgery that I have had – to see so they can know what to expect.

I will write more about the specific type of breast reconstruction (there are several different options) later. But, I definitely wanted to capture now, while I am in the midst of recovery, just how difficult everything is.

Not so much to convince a fellow breast cancer patient to have a different type of reconstruction (although, if I could do this differently, I never would do it this way, and, would consider seriously whether I would have any reconstruction done  at all) but, instead to prepare anyone who is going to go through this for what is really coming.

Knowing that I have to go through this very same procedure again in about three or four months is pretty tough. I mean I don’t have to go through it again, but, if I don’t, then I will have only one reconstructed breast. I have jokingly been referring to myself as Lisa – uni-boob. But, I really don’t want to have that name permanently.

I am very weak, have trouble getting around still. But, my nurse says that is more likely (at this point) due to the antibiotics I am on. I had never heard of that before. But, apparently the IV antibiotics I am on now cause muscle weakness, body aches and just a general not feeling good kind of thing.

What I have noticed is that everything I try to eat tastes awful – the drug (which I taste when it goes in and I taste for several hours after the administration of it) alters your taste. Things taste really different. Mostly, things just taste spoiled – really weird. But, this is all temporary. I think I only have another 6 days of the antibiotic (I hope so),

Well, I just wanted to provide an update and share some good news.

Thank you for your continued prayers, I really need it and I am very grateful for your prayers.

Love and peace,

Lisa

So, the good news is that I don’t have to have antibiotics intravenously around the clock, thank God. I really did not want that happening. There are so many reasons why I did not want that  – 1) is the pain that would be associated with wearing the device – it is very heavy, would have to wear it 24 hours a day for at least 7 days, 2) is the fact that the rate of infusion could not be controlled, historically I have not handled infusions well – whether it is simply saline or nasty chemo – my body just doesn’t tolerate it well. That is how I ended up with 8 to 9 hour chemo days – I got to see the morning and afternoon shifts both come and go before I got unplugged for the day. The upside of that was I got to know a lot of fellow cancer patients. I had my morning friends and my afternoon friends – got to see them all.

Anyway, I am just tickled pink that I don’t have to be connected to that dang thing. Now it is back to my IV pole – it is kind of weird having an IV pole in your living room, but, hey, it is temporary. Hopefully next Friday I will be done with the antibiotics. In either event, at least it will be more comfortably administered.

Well, happy Memorial Day Weekend everyone!

Much love,

Lisa

P.S. When I was leaving my surgeon’s office today, the receptionist ask me “if I had any special plans, maybe a barbecue or going to the beach for the holiday weekend . . .” I thought she was joking with me . . . I just said no, I would be taking it easy. But, I wanted to say, are you out of your mind? special plans, let’s see, walking up and down my stairs a few times a day (feels like I’m doing a marathon) and walking back and forth between two houses on my street a few times a day (again, what feels like a herculean task), seeing my nurse for IV drugs every day and trying to manage to keep some food in my belly . . . those are my special plans, you goofball!

I am guessing that she did not see me walking at the pace of an amoeba? Funny. But, she  was just trying to be nice I am sure. Still, it cracked me up pretty good. 🙂

No weight lifting apparatus required! YAY!

So, the antibiotic that I was supposed to be on continuously has been switched to one I can have administered just once a day – YAY. This means I don’t have to wear the pump thing 24/7. Instead, I am back to a nurse coming by once a day and he or she will handle the IV. I am told this one takes only 30 minutes to administer (the one I had been on was about 2 hours – but, it is not like I had anywhere to be :)).

So yippee!

What a relief!

Love and peace,

L.

Hello all,

I greatly appreciate your continued prayers and positive thoughts. I apologize for not posting here earlier. I have been in a great deal of pain and could not use my computer.

I was actually able to make a few postings from the hospital on facebook via my phone. However, it was too difficult to use my phone to access my blog. And, I prefer not to provide much detail on facebook. I post basics like – having surgery, released from hospital etc. But, I can’t imagine getting into any great length in that forum about my condition.

So, my condition . . . I can say, unfortunately, that I have never experienced this much pain in my life. This surgery has left me in more pain than I ever imagined possible. That being said, I can, oddly enough walk around my house (albeit slowly) and get up and down my stairs. But, I can not sit or lie down comfortably at all. I have four surgical sites. These sites go from the middle of my back (near my spine, left side) then under left arm, then left breast (where I now have a newly reconstructed breast – quite impressive – I mean I was stunned to see it the first time, couldn’t believe how real it looked – I just don’t know how they do it) and then the next surgical site is on the right side where the surgeon had to replace the expander.

When I woke up in the recovery room the first thing that I noticed was that my right side (where the first expander had collapsed or ruptured) was not causing me pain like before the surgery – after it collapsed, it caused a great deal of discomfort and so I was very relieved – even in the recovery room, where you are usually in a bit of pain, that it had been replaced. It was a great feeling to feel the pain in my arm gone, such a relief.

Well, since I have returned home from the hospital the pain in my left side (front and back) is pretty out of control. The last four nights have been the worst. I have drains that come out of my back (these are normal for surgery and are temporary – allows the body to drain fluid away from the surgery sites and to heal). Anyway, you have to watch the drains to make sure you don’t tug on them or let them fall or hang free from your body as the weight of the drains can pull on the tubes that go to the surgical site.

I had drains with the last surgery, of course. And, I managed these without any problems. They were just an annoyance, a little painful, but, really, no big deal at all. Well, for some reason this time – maybe because the drains are in a different place, I don’t know – I am having a lot of trouble with it. I am not sure though really, if it is the drains that are causing trouble or that I am just more troubled by the drains because I am in more pain than last time. Who knows. But, one of the drains got pulled on pretty good about three days ago, it got caught on my clothing and well, since I have been having shooting pains anyway, I didn’t notice that the drain was the cause on this occasion.

So, I don’t know, maybe the drain got moved, not sure. But, I have been in so much pain, it really has been just very, very bad.

I have constant pain which is bearable and what I would expect after surgery. But, then I have this gasping, really horrific pain that comes on and completely debilitates me, not to mention my caregiver. I have freaked out more than one friend at this point. My parents have been here the past few nights. This is just awful, they are up with me, can’t do anything but watch me scream out. Last night was a doozy. We’ve been up all night essentially. My poor parents. My Dad was very upset that I would not go to the hospital. But, I know I won’t feel any better there and going into the emergency room – well, they wouldn’t know what to do with a plastic surgery issue. I have plenty of pain pills here, including morphine – but, it all makes me pretty sick. I have some pain pills I can take and these drop it down a bit, but, that is all I can get out of it.

I have a pain management doctor – on vacation.

I have a primary care doctor – on vacation.

I have an oncologist – on vacation.

My surgeon, however, is still in town (she leaves tonight for a week). So, I see her today. We’ll see what she has to say about my pain level.

Let’s see what else, I don’t know. I am just suffering and I guess this is just how it goes. But, no one I know who has been through this procedure has complained of this kind of discomfort, they all think it is unusual. I am starting to wonder if something was left inside of me. Is that even possible? I mean could something have been left in my back? I am just in so much pain.

The pain seems to be worst at night, I look forward to 5:30 am everyday as that seems to be when I get a bit of a break from it. And that doesn’t even make sense. Except that I am up, moving a bit.

I have a good attitude, I really do. I had a great attitude going into surgery (at least I thought I did). I say this because I keep hearing: “your attitude about the surgery makes a big difference in how you feel” and “so much of it is mental”. I think if I hear anything like that from anyone again an alien will tear its way out of my body and bite off their head.

Sounds pretty gross and graphic, sorry. But, seriously, I can’t take this pain . . . or people telling me it is somehow in my head simply because it is not normal.

And, now, I am sounding ungrateful and bitchy and rude. But, I just am in so much pain all of the time. It is like two levels I go through – one level is the constant one – the one that I can deal with and the other level is the stabbing pains that go on sometimes for a few hours – almost always at night and after I have been lying down. It is the stabbing pains that are just beyond-belief-get-me-a-gun-put-me-out-of-my-misery kind of periods – sometimes lasting an hour, sometimes two or three. Last night the longest stint was nearly three hours. Popping pain pills, popping anti-nausea pills in order to handle the pain pills and all of that really not relieving the situation.

So, there we are, I’ve told the grim truth. I know of some people who will read this and be disappointed in me that I am not coping with the pain better, sucking it up so to speak. But, I just can’t, it is so bad. And I want this written here so that someone who is considering doing what I have had done will give some thought to not doing it.

If I could do things differently, I would not have had this surgery. No way.

I find it disgusting the focus that is placed on replacing your boobs, the very boobs that tried to kill me. The emphasis on having a new, improved, great “rack” is sick. Not once was the option of not having reconstructive surgery ever presented to me. I have since found out that surgeons are supposed to present that to you. But, I think the presumption is that most women would be pretty unreceptive to that idea – not having breasts. And, perhaps I would not have been receptive either, I don’t know.

But, I do know that this whole time I have been going through this cancer roller coaster, that I always felt very uncomfortable going from chemotherapy and oncology appointments – you know, the life saving stuff – to plastic surgeons. I saw three different plastic surgeons. They are all competent and skilled. But, I have to say, it has been a creepy road – this plastic surgery stuff. There is something creepy about a surgeon basically telling you that when they are done with you, you will look so much better than before, that you will be glad you had cancer. That is the feeling I have had for some time.

I know now that I should have trusted my gut, that what I was feeling meant I should have run right out of that door.

I am not saying that I would not have ever wanted to have reconstruction. But, I just want to live. I want all of my focus to be about that, living, surviving and enjoying the life that I now have.

I can’t imagine if I were to have a recurrence in the next year and to have to look back and know that instead of spending the past year getting new breasts and suffering the pain of all of that, that I could have just enjoyed being well . . . well, you see where I am going.

I am just tired of pain, tired of being sick and tired of being afraid.

I can’t make any of my cancer fighting foods since surgery. I know it sounds nutty, but, that scares me. I didn’t eat for a week after surgery and now that I am eating again, well, let’s put it this way, it isn’t what I would want to put in my body on a regular basis. But, it is food and it is the food that I am able to manage.

The cancer I had (had, had, had, had, HAD), I know it is past tense. I know that. I feel that, I believe that. I also know that with 50% of the cases it comes back within the first year out. I hate talking about statistics, especially crappy ones. My point is just, I don’t want to look back and say this is how I spent my time – getting new breasts, being in pain, not being able to go out and enjoy my life, work, produce, create. I miss all of that. And, statistically, well, no, I am not going to say it. I just wish I had not had this surgery. i wish I had never had the expanders placed in my chest.

Well, I guess i better go do something else now while I am in this window of less pain. Every day I keep thinking that maybe today will be the day that I don’t have the stabbing episodes. Maybe it will be. Maybe tonight I will sleep. Wow, that would be amazing.

Please pray for me that today is that day.

Thank you for your continued prayers and positive thoughts.

Much love,

Lisa

So last night I was cleared for surgery. That is a good thing. The bad thing is that I am not ready yet – I do not have caretakers lined up (not for me or my dog), need to clean, do laundry, shop for food, etc.

And, unfortunately, now I can not drive. I am in some pain now after the problem with the right expander. I can’t really do a lot of the stuff that I need to get done before surgery. It is a bit of a drag. Even the Costco run I was going to do is off – I can’t drive there myself and pushing a gigantic Costco cart around isn’t much of an option either. Last time I had everything laid out before surgery. Things were organized, set. But, now? I don’t even feel close being ready.

Everyday has been hijacked for the past couple of weeks – first the normal pre-op stuff, then hassles with my landlord (including yesterday), hours of phone business – all medical stuff, and most recently this rupture of the expander in my right breast (or whatever it is that you call this structure on my chest, I wouldn’t say I have breasts, but, don’t really know what else to refer to it as, lovely, I know).

I just keep losing every day to unplanned, unforeseen hassles. Yesterday was taken up with getting cleared by a cardiologist and also trying to figure out what happened to my right side. It wasn’t until 8 pm last night that I learned from my surgeon (not my reconstructive surgeon, but, my general surgeon) that I did not need to go into the emergency room, that I could/had to wait to see my plastic surgeon the next day (now today).

So, now today, I will seem my plastic surgeon to figure out how to proceed with surgery (surgery was supposed to be on the left side only – they can only do one side at a time because of the type of surgery I am having and the radiation that I had). Now that the expander has to come out and be replaced – I am uncertain as to what will be done on Monday. Probably she will go ahead with the reconstruction on the left and then a temporary deal on the right. It is definitely not what I wanted, nor what my surgeon wanted for me. Anyway, again, today is another day that I hoped to take care of pre-op errands that is now lost to medical.

I also HAVE to finish a timeline that my attorney needs to assist him in proceeding against my landlord. This is all so crazy. I am not even working, yet, I am working all of the time.

Another thing that changed as of late yesterday is that I now need caretakers for a longer period of time (not that I have anyone lined up yet anyway). I had only figured on needing help for about a week after surgery, since I would still have use of my right arm (since I was not having surgery on the right side). But, now it is pretty likely that I will have surgery on both sides, leaving me, like after the mastectomy, unable to use either arm for a while.

I am so frustrated by this. It is so limiting and, it is painful.

So, I am pretty upset right now. But, what can I do? I just have to somehow figure it out.

My landlord sent two workers over today to take out the illegally installed dryer vent that was put in on my patio. The workers moved my patio furniture and all of my plants (including three hibiscus trees) to do the job. They left without putting any of it back and so now I am stuck with this messy patio that I can not physically clean up. So rude.

Okay, I guess I have complained enough for one day. Sorry, I am just in pain and very, very frustrated that I can not physically just do the things that I need and want to do to get my space and myself ready for surgery.

Ugh!

Much love,

Lisa