RMFB

Ok, I can't take credit for this. I didn't write it. I just copied and pasted it. But I love it, and it makes sense to me, especially in the upcoming months (years?). Enjoy.

"Thus, for anyone out there who is not a cancerland resident. . . and thus doesn’t get it, here are a few declarations, in case you blocked them out the first or seventeenth time around, or just thought perhaps I was making it all up.

1. No, I am not ‘all better.’
2. Yes, I am still slogging my way through fatigue and low energy three-and-a-half years later. No, it’s not as bad as it was. Now, it’s less like being run over by a freight train and more like being flattened by the occasional stray eighteen-wheeler.
3. Yes, my concentration just sucks sometimes. And my train of thought sometimes derails unexpectedly. Although I can still usually find my way home.
4. When #2 or #3 are bad enough, I have to stop what I’m doing. Immediately. Not when it’s convenient for you.
5. I am working part-time not by choice, but out of necessity due to #2, 3 and 4.
6. That means I pay all my old bills with 1/5 less income. So if I say I can’t afford it, I can’t afford it. Period.
7. That also means that saying, ‘Why don’t you just hire someone to [fill in the blank with exertional life/home/yard task] for you?’ is not a helpful suggestion.
8. That also means that suggesting I should get more physical therapy for my chronic cording/arm/shoulder/chest pain is about as helpful as baying at the moon, because it involves a $500 out-of-pocket deductible and an average $30 co-pay for each visit, which I can’t afford. Besides which, it’s almost pointless, because no matter how much physical therapy is done on me, the problem always comes back.
9. It always comes back because radiation damage is permanent. P-E-R-M-A-N-E-N-T. Write that down and stop bugging me. If you really give a shit, how about buying me a hot tub?
10. No, I cannot work ‘some extra time’ to make up for my lost income. I can barely scrape out my part-time hours. That’s P-A-R-T time. See #2, 3, 4, 5 and 8.
11. When I make plans to hang out with you so we can catch up after not seeing each other for a while, that doesn’t mean it’s okay to bring your secretary/sister-in-law/new boyfriend/other-person-I’ve-never-met-before to tag along without asking me beforehand so that maybe their presence will mean I won’t talk about cancer. Guess again. This is where I live and I’ll talk about whatever I damn well please. And if you don’t like it, don’t make plans with me.
12. No, I am not cured. I am NED. There’s a difference. Look it up.
13. No, I will not explain any of this to you again.
14. The next time you don’t understand something, I suggest you RMFB, which stands for ‘Read my ___-ing blog.’

Ahhh…I feel much better now."

Non-Infection

This morning I had an appt. with Dr. S to get a “fill up” and for him to check the infection along my left incision line. Turns out, it’s not infected. Yes, the wound opened up, and yes it is draining but no, it’s not infected. It seems that when that part of the wound opened up some tissue became necrotic and turned yellow/white/gray. I thought that tissue was dried up crusty puss, but no. Just dead tissue. So he cut it off and steri-stripped the skin back together….ewwwww….and then filled me up.

He also told me that during surgery I didn’t have enough pectoral muscle or skin to reattach my muscle once he put the expanders underneath them. So he used small pieces of “donated” skin to put me back together. What? As an organ donor I never really thought of donated skin. And skin is the biggest organ of all. Anyway, the donated skin is cleaned of all cells, bleached and essentially become collagen. So….I have an extra muscle in my left elbow and not enough muscles in my chest.

I wonder if I can still be an organ donor once I am a cancer survivor?

So that is good news. And right now my brother and youngest nephew are in town. So that is better news. I miss my brother all the time. We don’t see enough of each other. So he and my dad drove me to Dr. S this morning and when we got back here he and my dad loaded up my moms Lazy Boy to take it home to her. They also took Michelle with them. And I wanted to go too…wanted to spend the day with my brother but guess what? Getting “filled up” kind of hurts. And once the chair was moved I found that one Percocet I had dropped. So I swallowed the pill and napped. I will see everyone for dinner tonight. And I can spend tomorrow with my brother.

Someone told me that after the “fill up” it felt like she was having a Braxton Hicks contraction. Which is pretty much true. And remember how I said after surgery I felt like I couldn’t breathe right, that I couldn’t cough or take a deep breath? “Fill ups” kind of do that to me too.

It’s a very strange process that I am going thru. Boggles my mind at times. I have recently become friends with a woman who is going thru (almost exactly) what I am going thru and I think we help each other. These friendships that I have made since this diagnosis boggles my mind too. I have met quite a few wonderful women since April that I would never have met if it weren’t for breast cancer. There is an immediate bond that forms when two people who are walking the same path meet, even if one person is further along the path. Sometimes two people who walk different paths form a bond just because one of the two reaches out and said “I’m here, I care, I’m praying”. I have been doubly blessed. First by the people already in my life; and then by all my new sisters in pink.

So yeah….yesterday I was pretty pissed, but today was much better.

Why Me?

I know I started this blog as a way to keep multiple people informed of my health without having to answer multiple questions all the time. But then I found blogging to be cathartic. And sometimes I just need to vent. Like today. Right now. I need to vent.

Because I am just so pissed off right now.

It’s bad enough that yesterday I find my left incision line to be infected. It’s bad enough that seeing that pretty much put me in a funk I couldn’t shake all day, even tho I was spending the morning and afternoon with a good friend, a person I hadn’t seen in a while, a person who makes me smile and laugh, a person who probably couldn’t wait to get rid of me by the end of the day because I was just not fun.

This infection pretty much ruined my day. And by the end of it I was in tears. As I mentioned before, I like to worry, and I’m good at it. So my mind automatically goes to the bad places. “I’ll end up in the hospital with IV antibiotics”, “I’ll have to have my expander removed”.

But I woke up today hopeful for a better day. And then I tried to drive. Guess what folks? Didn’t happen. I could hardly make it around the block. Who knew you used your pectoral muscles so hard while driving? I was fine as long as I went straight. My right arm (the node side) just couldn’t do it. Dam. I was just so mad about that. I felt like my chest wall on the right side was gonna burst open. And I’m all out of Percocet now too. Dam dam dam.

So forget it, my mom drives and off we go to BJ’s where I try on glasses. I don’t even know if I should get into it or not…but what a racket their eyeglass place runs. Seriously, their Buy One Get One Half Off? Good grief. Here’s how it goes down. The sunglasses I want are $130 and the glasses are $120, so total it would be $250 but with the BOGO it’s $190, right? Wrong. With the BOGO it’s $286. Ummmmm…..what? Well, it seems that with the BOGO then you have to pay the “retail” price of the glasses. So I peruse my flyer, I closely examine the signs they have displayed, but I don’t see “retail” anywhere. I stood up and had to restrain myself from jumping over the counter and hitting the poor woman behind it. Really, it’s not her fault, I know…I was just so mad. I almost walked out. But in the end I purchased just the eyeglasses. And I like them, I do, for what it’s worth. I didn’t want to buy them for the reason I need to buy them tho. Dry eyes while on chemo. An inability to tolerate my contacts while on chemo. Blah blah blah. So they should be “ready in two weeks”. Can we expediate that? Sure, that will be $10 more.

Give me a freaking break, would ya?

And I know, I know, things could be worse. I could have mets to the brain. Did you know Herceptin doesn’t cross the blood/brain barrier? Nice, huh. I could have mets to ANYWHERE!! And I don’t. At least I don’t think I do. But I really don’t know. And I suppose I could push Dr. Sh and insist on a PET scan. But what would that ultimately prove to me? That I have cancer? That I need chemo? Well, I already know that stuff. Do I need more proof? Doubt it.

But maybe I should ask for a PET scan in say…6 months? Just to check. I don’t know. I am glad I found out about this cancer so early. Honestly, I wasn’t joking when I said before that I could probably have gone another year, maybe two, without knowing I had breast cancer. So yeah, I’m glad I found it early; hopefully I found it before it spread. Hopefully all I have done and all I plan to do to protect myself is enough. Hopefully. Hopefully.

Funny thing is…since my surgery I have been in a good place. Emotionally anyway. I haven’t cried, or felt down, or needed anti-anxiety medicine. I felt an enormous sense of relief after surgery. I truly felt, and still feel, that all the cancer has been removed from my body. That the tiny little micromets they found was just the very very beginning of the cancer spreading, that it never left that node and since that node is gone, along with my breasts, then so is the cancer.

And following surgery with chemo, and chemo with rads is just precautionary. Maybe even going overboard a bit? I don’t know.

It’s just overwhelming is all. And emotionally I have stumbled. I have cried. Sobbed. It was a rough night. And anti-anxiety meds are now being swallowed. Luckily I have a good husband, and good friends, and good family. People who allow me to be weak for a while. People who shut up and listen, who hug and reassure me.

And I know things could be worse. I know that. I really do. But sometimes I just can’t stop thinking “why me?”

Infection

The steri-strips that covered the incision site of both breasts fell off this AM....much relief from the adhesive itch....however the left incision line is bright red and there is some nasty drainage there. I called Dr. S. and he is calling CVS and ordering me 2 antibiotics. He asked if there was pain...uh...no, but I'm completely numb there too.

I have an appt with him on Tues. AM to get a "fill up", wonder if that will happen? I will see him, but I doubt I will get expanded.

Prayers needed please. An infection is not what I need right now. It could seriously screw up my chemo schedule. And while I don't WANT chemo, I do want to get it started so the toxins can do their job and I can get on with my life....

Dam...I'm really pissed right now.

Hair and Boobs

Since I have had all this down time lately I have been watching a lot of TV and one of show I have been watching is old episodes of Grey’s Anatomy on Lifetime (weekdays from 1 to 4). Here is something interesting I have noticed while watching this show. When someone on the show has “cancer” and is going thru chemo they wear these gorgeous head scarves to hide their bald heads BUT THEY STILL HAVE EYEBROWS!!

To be honest, I am more concerned about losing my eyebrows then I am about losing the hair on my head. I can wear a wig, a hat or a scarf to hide my head…but my eyebrows? Can’t hide that. As a matter of fact, on Monday I am going out to get new glasses. Hopefully I will find a funky pair that kind of cover the area of my head where my eyebrows are (or…would be) to minimize the fact that the eyebrows are missing. Even tho a very kind neighbor has purchased eyebrow stencils for me, and assured me she will show my how to use them properly. Those of you who know me, know I am not very good with a makeup wand. So wish me luck with that.

Did you notice I just used the word “funky”? C’mon, you all know I am not “funky”. I am drab. I like greys and greens and browns and blacks. Nothing funky in my closet. But somehow having cancer makes me want to be funky. So last night Alan and I went out in search of some funky head scarves. And I ended up getting 4 scarves. One black, one grey, one pink and one patterned with rosy pink and grey. Not very funky, I’m afraid. But I tried. Alan tried too; you should have seen him with the scarves on his head. The comedy factor was high last night.

Here is another thing that has caught my attention these last few weeks. Boobs. Everywhere boobs. According to some other women I have talked to lately that have or have had breast cancer, this is normal. I can’t help but check out the rack of every woman I see. And then I try to figure out…are they 100% real, lifted, reduced? Does the owner of the breasts like them? Would she be upset to lose them? I’m truly not upset that my God given breasts are gone. Really, I’m not. I wish I could have gotten rid of them without surgery tho. My new breasts will be great. Perky. The size I want them. And I will never need to wear a bra again. So yeah…losing my God given breasts doesn’t concern me. Dam things tried to kill me…

The Tumor Board

Dr. Sh called me this AM to tell me about the “tumor board’s” meeting last Friday. I don’t know how many MD’s were at that meeting but I do know that Dr Sh, Dr C and Dr. M’s partner were there. They discussed my “case” and the tiny little micromets found in my Sentinel Lymph Node. Specifically, they discussed whether or not I would benefit from Radiation.

From what I understood of my conversation with Dr. Sh is that I am, once again, in a “grey area”. It’s impossible to know if the cancer has spread beyond the SLN because no other lymph nodes were removed. In hindsight, I wish I had asked Dr. C to remove at least 4 or 5 nodes…then I would know if the cancer had travelled to more nodes or not.

However, Dr. Sh did tell me that all MD’s on the board think that rads is something I should seriously consider based on my…get this…young age. I never really thought of 39 as being particularly “young”. They all feel that when I meet with Dr. M on July 6 I will get some more necessary info to help me make this tough decision. Maybe she will have some data…some studies…some percentages…some something that will help me.

Radiation will set back the timeline I have in place for beating this cancer. See….the way I figured it…I would have the BMX, follow that with chemo while getting “the girls” expanded weekly so that once I am done chemo and “expanding” I would be able to ring in the New Year with my new breasts. Now, if I do rads, I won’t be able to change out the expanders for the implants for at least 6 months after rads is complete. So…if rads is say….28 treatments…that will bring me to the end of November….which means I can’t do the change over surgery until about this time next year.

Now, I know this should not be a factor in my decision making process…but put yourself in my shoes for a second and then maybe you can understand why I would like this to be over…sooner….

But on the other hand, once chemo is done I will still have to go to the infusion center every third week for my Herceptin infusions until July of 2013…so really this whole process won’t be over till a year from now anyway. (I will need to have the Herceptin infusions for a full year). And if I really think about it then…once I am done the Herceptin I will start taking a daily oral medication for 5 years…so really, this whole process won’t be over for me till 6 years from now.

And that is based on the assumption that this aggressive HER2+++ cancer really is (or will be) gone from my body. Because if it’s not…oh the places it could go….

So I don’t really know why I struggle with this decision. The answer is quite clear. Because I have invasive and aggressive breast cancer. And I am young. And I have a child. And I want to live for 50 more years.

Taxotere. Carboplatin. Herceptin.

TCH. Get to know those letters as I will be using them a lot in the near future. Those are my chemo drugs. Well, two of them are my chemo drugs, the “H” is the drug that specifically targets the HER2+++ cells in my body, it’s not chemo. If there are any left in my body. It’s quite possible there aren’t any cancer cells in my body right now.No HER2+++, no cancer.

Taxotere. Carboplatin. Herceptin.

So here is how it goes. Starting Tuesday July 10 I will begin chemo. On that first day I will be there for about 4.5 hrs and I will receive the TCH. But first I will be pre medicated with some anti-nausea meds, some Benadryl and some steroids. And every third Tuesday up to and including Oct 23 I will get all of the above, for a total of 6 chemo infusions. On the Wed after each of those Tues I will go back and get a shot of…of….uh…some big word that I forget but that begins with an “N” to help boost my white blood count. I hear that shot can make my bones ache…so that sound fun…

On all the other Tues I will go in for about 1.5 hrs for an infusion of Herceptin only. No pre-meds with that. Just an in and out. Maybe a little IV fluids if I’m feeling dehydrated. Tues are going to be very busy days for me, huh?

On the TCH days I will need someone to drive me there and to drive me home. I was told that I won’t be allowed to drive after the chemo infusion because of the pre meds. On the Herceptin only days I can drive myself. Either way, I would love a ride…because it will be boring sitting there by myself. Scrabble anyone??

I can expect, in no particular order, the following side effects from chemo: nausea, vomiting, fever, diarrhea, infection, fatigue, cardiotoxicity, neuropathy, dehydration and hair loss. And a whole bunch of “less common” side effects that I will need to look out for. Like an allergic reaction. Wouldn’t that be just lovely…allergic to the meds that are suppose to save my life?

Anywho….Dr. Sh is an agreement with Dr. C that I really don’t need radiation therapy for the small micromets that was found in my lymph node. They are both in agreement that I am currently cancer free. That if I weren’t HER2+++ my cancer treatments would now be over, that the BMX took care of it. Dam HER2+++. So…if the chemo and its effects are cautionary, why would I expose myself to radiation and its effects too? I want to be more aggressive then this cancer, but on the other hand I don’t want to expose myself to radiation if it’s not necessary.

But here is an interesting little tid bit. There is a “tumor board” at LVH that is composed of a bunch of oncologists, including Dr. Sh and Dr. C, and hopefully Dr. M (I will get to her in a minute) that is meeting today and one of the cases they will be discussing is mine.  Case…Case…I am a case?? And in particular, they will discuss the need for radiation based on the tiny little micromets they found in my lymph node. Dr. Sh told me to call him next week and he would tell me the outcome of that meeting.

And I will call him. Because on July 6 I meet with Dr. M who is a radiation oncologist (told you I would get to her) and I would like to know the outcome of that meeting before I see her. I think it’s very cool that my “case” is being discussed/debated…I’m just not happy with the word “case”.

On a good note…the pain following surgery has really subsided now, 2 weeks and 1 day post op. I think I can manage the pain with Motrin for the day time and take the Percocet only at night. I no longer have pain when I am still. A little tightness maybe, a little soreness too…but not “pain”. I still can’t raise my arms above my head very well, or very often, and I can’t lift anything more than a couple of pounds. I most certainly can’t drive as I am sure I couldn’t react properly in an emergent situation, and sometime I have trouble with doors, and I need help getting my shirts off…not on, just off, but for the most part I am feeling pretty good. I got thru yesterday without a nap, I rested, but I didn’t sleep.

So I am getting there…really getting there. Just in time to start chemo and suffer those side effects. But, the bright side of that is the chemo is only every third week, so I will have more good days then bad each month.

And I keep looking for the bright sides.

Stage 2A

Busy, busy day. So busy I had to spend the morning in my Lazy Boy, just chilling out. (like how I call it “my” Lazy Boy, mom?)

Anyway….I had two MD appt. today. First was with Dr. S. All stitches are now out and my expanders have had their first expansion…or should I say their first expansion while I was awake? Because the first time really was when I was under anesthesia. But anyway…that went well…kind of like a “fill up”. It was an extremely weird experience. Really. Unless you have had it done you wouldn’t understand it, so I am not even going to try to explain it to you. And….because I am persistent…I did finally get Dr. S. to agree to give me some Botox, at an employee discount, once I am done “expanding”.

From Dr. S. I went across the street to Dr. C. The time has finally come. Time to find out the true extent of this cancer. Oh man was I nervous. I have been waiting for this moment since April 20, and now it is finally here. And it was exactly what I expected, with a twist. Of course there is a twist!! This is me! You know…the chick with the extra elbow muscle? Did you expect there to not be a twist?? C’mon….

I had a 0.8cm x 0.3cm tumor in my right breast. (Remember what I said before? Nine years before it’s 1cm in size?). I had two fibroadenomas in each breast. I had DCIS in my right breast. I had microcalcifications in my left breast. I AM A SMART AND PRO-ACTIVE WOMAN!!!!

But I digress…..here is the twist. Contrary to my preliminary report, my Sentinel Lymph Node was found to have a 0.35mm cancerous area in it. The two nodes that were removed? Well, they were stuck together so the lab treated them as one. And in that one, there was a tiny tiny tiny bit of cancer. That is now in a garbage can somewhere.

So…that leads to this. Should I, after I am done chemo, have radiation treatments to my right axilla area and right chest wall just in case? And would a radiation oncologist even agree to subjecting me to radiation based on a 0.35mm area that is now on the outside of my body? Or would the radiation onc want proof that there is more nodal involvement then what we know, therefore leading me to another surgery where ALL my lymph nodes on the right be removed? And would I be agreeable to that surgery? Am I even agreeable to radiation? You know I will do anything necessary to rid myself of this cancer, but I am not so sure radiation is necessary.

So I will meet with the radiation onc, and then I will get a second opinion, and if that opinion differs from the first opinion then I will get a third opinion. And I will let the majority rule. But I can honestly say, I am of the opinion that radiation isn’t necessary. But what do I know….

I know this….if I wasn’t HER2+++ and there wasn’t a 0.35mm area of cancer in my lymph node then I would be done with my cancer treatments. I know that if I wasn’t HER2+++ and there was a 0.35mm area of cancer on my lymph node then I would be told I need chemo. So…I am HER2+++ and I am doing chemo…so…really….rads?

I don’t know what to do about that. And luckily I have plenty of time to think about it because I need chemo first. And chemo will take me to the end of October…

On a good note, the surgical oncologist told me today that this cancer was found “really early” and that if I choose not to do the radiation treatments then she feels I will have at least “50 more years of a wonderful life”. I like those odds…

If it weren't for that 0.35mm thingie, I would be Stage 1.

And Mike….you know who you are….the guy from DD Enterprises at 36 Bigguns Lane? Thank you. That was the best laugh I have had in a long time.

Post Op Ramblings

11 days post op and as I said before, each day is better than the last. Except for those few days that just really sucked, those few days that I just couldn’t get out of the chair. I think a Lazy Boy recliner is a must for all women who have this surgery. Seriously. Because I still can’t get up if I lay down flat. Which I do, on a daily basis, just to stretch, but someone had best be there to get me up. On the 3 occasions that I tried to sleep in my bed, well…those are the days that really sucked.

But remember how I said I wasn’t going to renew my muscle relaxer? Yeah, I changed my mind. I need those pretty little pills.

The support and love I have been receiving has been truly life saving. Meals are delivered three times a week (and yesterday a friend brought us some food “just in case”. Gotta love your friends) and has really been helpful. In this house Alan does most of the cooking but I do the shopping. At first he wasn’t too keen on the idea of meals being delivered, but once I had surgery and came home completely immobile and unable to be left home alone he changed his mind. He has been a rock and has taken over the household duties that I performed (with a little help from my mom) and taken care of me and Mary. And now Michelle is home again so he needs to take care of her too. And don’t forget..he is the only one bringing in a paycheck these days, so he has been working too. From home. Nice.

So today, like any normal given day I wake up at 6:30 to start my day. I need to shower and dress and get Michelle out the door before 9 for day camp. And I was successful with that. Took a pain pill when I woke and got on with it. Alan and I dropped her off on time and then he drove me to my MD appt. Today’s appt. was just one of those yearly woman appts, you know what I mean. I had briefly considered canceling it because really…do I need to deal with that too right now? But I wanted to see that MD, I wanted to thank her for being so concerned about my overall health that she ordered mammo’s every six months for me. She is a wonderful OB/GYN and I like to think of her as a friend. She isn’t that MD that rushes thru your visit. She sits. Talks. Hugs. Loves. It was good to see her. When I left the girl who checked me out told me she was a 16 year Breast Cancer survivor. 16 years. She was 29 when she was diagnosed. And she, like me, was HER2++++. 16 years. That was way before Herceptin was on the market. So of course, I cried like a baby, standing there in the hall. Weeping. I was just so happy to actually talk to someone else who was HER2+++. I have an online support group of HER2+++ women but this was the first woman I spoke to face to face who had the same exact cancer as me. The same. Same. Dam, it was good to talk to her. To see her standing there before me all healthy and happy. Because this HER2+++ scares me. I had thought that before Herceptin was available it was a death sentence.

When we got home mom was here doing some cleaning….she won’t dust…and apparently dusting is what I will owe her after this is all said and done….and we went out for some breakfast and a quick trip to our chiropractor. What’s amazing about our chiropractor is that he can adjust me using some funky tool while I sit. So I don’t have to lie down…ha…can you imagine that? Lying on my stomach right now? But by the time we were done that I was done. I just needed to get in my Lazy Boy and close my eyes. Too weak to even open/close the car door. 6 hours had passed since I had taken a pain pill, and that was about 1.5 hours too long.

Mom, I will gladly dust your house to your standards when this is all said and done. Because it will be ALL SAID AND DONE!!

Tomorrow I see Dr. C. I will get my final pathology report. Fingers crossed and prayers being said that it will match my preliminary report. Oh God, please let it match the preliminary report.

BMX: The Whole Truth

It’s been a week since my BMX and since at this exact moment I am not completely blitzed on pain meds I have decided to share with you the whole truth regarding this surgery. Please keep in mind that I don’t have a lot of surgery experience, this being the only major surgery I have ever had.

Ok, here is the whole truth. This surgery sucked. Really, really sucked. Never in my life have I experienced such pain. Even now, a week out, I can honestly say I still have never experienced such pain. When I awoke from the surgery I felt like an elephant was sitting on my chest. And that elephant stayed there from Thurs. to Mon when she was replaced by a baby elephant. I couldn’t breathe properly. I would take a breath, say a few words, take another breath, say a few more words and on and on it went. Those of you who are in the medical field know what a Pox is, right? Pre-op my Pox was 99-100%. Post op it was 95-96%, still a good Pox but not my norm. And I couldn’t cough. Or yawn. Ever have a cough stuck on your throat? Terrible. Took me days to get that one cough out and each time I tried to get it out I thought my chest would rip open.

Worse than the cough was the complete immobility I experienced. For the first 36 or so hours I couldn’t lift up my head. That’s right…I couldn’t lift up my head. I needed help to perform that simple motion. And once I could lift up my head it didn’t make life any easier as I couldn’t move my torso without help. Still can’t sometimes.  Sometimes I feel like that lady in the commercial “help, I’ve fallen and I can’t get up” except I hadn’t fallen, I just couldn’t get up. Even last night I couldn’t get up by myself after lying on the couch.

I can’t get my arms up either. Can’t get a glass or plate out of the cabinet. Pretty much, if my shoulder has to be involved in the movement, I can’t do the movement. I am working on that real hard, doing exercises to improve my range of motion, but it’s a slow healing. For four days I couldn’t even lift up a full cup of ice water, if I was thirsty I needed assistance just to get a drink. I can lift it up now, but I need a straw if I have any hope of getting the liquid into my mouth.

I have taken 4 showers since I have been home. 3 of them I have needed help for. Thankfully I have a huge network of nurse friends willing to help me with things like this. It’s embarrassing to need help with that. Now that the drains are out I decided yesterday to shower on my own, with Alan on standby. Did ok with it, but think there is still conditioner in my hair. And if Wanda hadn’t loaned me her hair dryer stand I never would have gotten my hair dried. (she also made me two head-huggers…loving the camo one!) But I can’t yet get dressed or undressed by myself. Good grief

And I can’t help but wonder if the pain is this bad with meds….what would it be like without them?? Aside from antibiotics I was sent home with pain pills and muscle relaxers. Of the muscle relaxers I have 3 left. Which means that in the past 6 days I have taken 27 of them. Of the pain meds I have 4 left, which means in the past 6 days I have taken 36 of them. I will pick up more of the pain meds today (or, Alan will) but I will be done with the muscle relaxers after I take the ones I have. I could refill them, but  I won’t. I will rely on the exercises to relax my muscles.

As for being a mom…well….I haven’t been very good at that lately either. As a matter of fact yesterday was Michelle’s last day of school and my parents took her home with them (again) and she will stay there till Sunday. It is very hard to not be able to “play” properly. And I have been scared to be alone with her because what if….what if she falls off her bike….falls off the swing set….twists her ankle on the trampoline….slips in the shower…? Next week she goes to Day Camp daily from 9-4 and I sure as hell hope that by the end of next week I am at about 80% better. I can’t hug my child right now. She can’t snuggle up on my lap…it’s terrible, it breaks both of our hearts. And even tho she knows it’s temporary, she is only 7 and it’s hard to see mommy like this. But she is helpful…help mommy get the pillow under her head….bring mommy the phone…scratch mommy’s nose….

But while I am experiencing all of this I remind myself that it could be worse. Much worse. I know that. I see “worse” every time I go to work, (which I am not doing these days) and every time I look at Mary. I know it’s temporary, but still, it’s me….and those of you who know me know I don’t do “pain” well, I don’t “follow MD orders” (Or "Nancy's orders") well. I am a control freak, a micro-manager, a little OCD.

And I also know that this is worth it. That I am doing what I have to do to ensure myself of a long and happy life. Wanna know something interesting? If my final pathology report comes back the same as the preliminary report…if it comes back and says “yes, the lymph nodes are cancer free”…then this surgery could have been the end of my cancer treatments. BUT…because I am HER2+++ I still have to do chemo. Even tho there is a very good chance that there is NO CANCER LEFT IN MY BODY. Sucks. But, the chemo too will be worth it. Whatever I have to do will be worth it.

Once again I have to say I consider myself lucky. Lucky that my breasts were problematic, lucky that I have a great gyno who encouraged me to be pro-active when it came to my breasts, lucky that this cancer was found NOW and not next year, or the year after that. It scares me to think I could have gone another year or two without knowing I had breast cancer. Oh gosh…that really scares me.

And the elephant is gone now, replaced by a board that is now resting on my chest.

5 Days Post-Op

Day 5 post-op dawns with me feeling muuucccchhhh better. The pain each day lessens and is well managed by the pain meds and muscle relaxers I was given. I have this secret wish to sleep thru the next few months and wake up when this is all over. If I continue taking the pain meds and muscle relaxers that could happen! Sleep is good, right? Keeps me from micro-managing Alan and my mom and all the household duties they now attend to. Like the other morning when I came downstairs and the kitchen was a mess? Nothing I can do about it so I just went back to my Lazy Boy and slept. I may never give that chair back to my folks.

This morning I went to see Dr. S (plastic surgeon) and he TOOK OUT MY DRAINS!! Oh boy, what a relief that is! Those things sucked. Had to tape the tubing to me and pin them to my shirt to keep them from pulling on me. Which sort of worked, but sometimes it pulled anyway. Drove me nuts. I had thought they would be in at least 10 days but as I had minimal drainage he took them out. I love that man.

Before my surgery he had told me that after he inserted the expanders he would close me up using glue and steri strips, but once I dared to peak at the area I saw stitches. Then I vaguely remembered having a brief talk with him Fri. AM while I was still in the hospital and doped up on morphine. He had told me then that he had done something different. When he called my Sun. to check on me I asked about the stitches, he said he was “trying something new.” Um…what? New? As in… you never did this before? So today I questioned him further on this “something new” and he said what he did will minimize my scarring. I don’t think I want to get into it tho, it’s pretty personal. But I can see his point. I have seen pictures of reconstructed breasts and I did notice a railroad track-like scarring going east to west. My stitched up area is only about 2  inches long on both sides. And once you throw a nipple in the middle….well….there won’t be much of a scar to see. Which is fine with me.

I did get the impression that while he may have used this method before, I’m the first person he used this method on breasts with. Which made me want to ask him again for a little gratis Botox.

And speaking of expanders, mine were immediately expanded with 120ml of saline. So I am not flat, I am more like the 12 year old me. Michelle even said I had little bumps and so I asked her how big should my new boobs be, and she held her hands up about a foot from each other. Ha! That would make Mike happy, but I would fall down!

I also have stitches at my port site, which is what hurts the most. I can see the bump of the port under my collar bone and I can see the catheter that goes from the port to the jugular vein. It’s gross looking. I hope it’s only so visible because it’s swollen and won’t be like that for the whole time it’s there. And there are stitches near my right armpit where the lymph nodes were removed. Did I mention THEY ONLY REMOVED 2 NODES AND NIETHER OF THEM HAD CANCER CELLS??? Anyway….at both those sites the stitches are the type that dissolve on their own. So good, one less thing to do.

And now I wait. Wait wait wait…till next Tuesday when I see Dr. C again and get my final pathology report. Oh boy…And wait till next Thursday when I see Dr. Sh (medical oncologist) again to find out what chemo cocktail I will be getting (although, at this point I think I know) and when chemo will start. Most likely the beginning of  July.

Post-Op

I did it. I can’t believe I did it, but I did. At 0545 on Thurs. May 31 I arrived at the hospital and prepared myself for a B/L Mastectomy (from here on, I’ll just call it a BMX). I spoke with my surgeons, got an IV started and was wheeled in to the OR at about 0730. I was semi awake at that point. I watched them strap down my left arm, Dr. C held my right hand, warming blankets were under and on top of me, and they put an oxygen mask over my face. I remember saying “I don’t need oxygen” and from that point on I don’t remember anything. I don’t think there was oxygen coming out of that mask.

Next thing I knew I was in the recovery room. There was an oxygen tube in my nose that I removed, and they put back. And I removed. And they put back. Did you ever need oxygen? It smells weird and does weird things to my taste buds. I was in an amazing amount of pain and the recovery room nurse kept putting pain meds in my IV. I couldn’t move any part of my upper body without pain searing across my chest. I had no idea how often my pectoral muscles were used until that moment. Alan was there and he told me this:

THEY ONLY REMOVED 2 LYMPH NODES!!

If you have been keeping up with my blog then you know that is good news. But I will give you the short story about the nodes now. The first thing that happened in the OR was the Sentinel Lymph Node Study. Remember that radioactive isotope dye they inserted the day before surgery? Well that dye goes to the Sentinel Lymph Node (the main node) that receives lymphatic fluid from a cancerous tumor (still don’t know yet if I even had a tumor). And then kind of follows a chain from one lymph node to the next. So Dr. C removes the first node and the second node too because it was stuck to the first node. Those two nodes were immediately studied by a pathologist and:

NO CANCER CELLS WERE FOUND IN EITHER ONE OF THEM!

Which means….most likely…but we do have to wait until the final pathology report comes back….MY CANCER HAS NOT SPREAD OUT OF MY BREAST!!

YES!!!! I still need to do the whole chemo thing tho, just in case one nasty little cell escaped and is cruising around in my blood looking for a place to stop and grow. Remember what I said before, it takes 100 billion cells to make a tumor 1cm. in size. So the chemo, the Hercpetin and the Tamoxafin are still necessary for my survival.

But I will, right now, say that I am a SURVIVOR!!

Also, right now, I hurt. For about 24 hours post op I couldn’t even lift my head up off a pillow. My folks brought over their Lazy Boy recliner for me. Which is a huge help because I can’t get up once I lie down. The chair is my new home. I spend almost the entire day in it. And I still need help getting in it, but I can get out of it OK. I eat meals sitting in it, read in it, watch tv in it. Sleep in it.

And my support system is rallying. Alan is here all day (of course) helping me eat (couldn’t do that for a meal or two by myself), mom and dad come too, and they have taken Michelle for the weekend. I saw her Fri. night and Sat. morning but now won’t see her again till Mon. after school. She is glad that I am home but saddened that I’m pretty much immobile. And the nurses I know are rallying too. Nancy came by Friday night to remove my bandages and she came by last night to help me shower (Alan bought me a chair to sit in while I am showering) and tonight Robin will come over and help me shower too. Today Paulette is coming and we will take a short walk around the block. Which will feel so good, it’s so nice outside. Gifts are being delivered, text messages, emails and phone calls are coming at regular intervals, the meal system Laura put in place starts tomorrow and it sure is nice to be so loved.

I could go on and on about my hospital stay, my pain, what I can and can’t do, and all the weird dreams the pain meds make me have, but I won’t. I won’t dwell now on the negative. I choose instead to bask in the rays of sunshine people have been pouring down on me since my diagnosis and especially in the last few days.

I will wait in optimistic anticipation for the final pathology report; I will start and end my chemo with dignity and grace. I will handle all the yukky side effects the best I can. And I will hope to ring in 2013 with new breasts and hair.

Ladies, go get your mammogram.