If ya can't say something nice...then don't say nothin' at all" ~Thumper

Welp...I just had my 3rd chemo session yesterday. 3 down, 5 more to go! I actually have one more AC to go, and then start a new round (4 doses) with Taxol (and Herceptin). I will continue to get Herceptin for a year (I will go in to get an IV every 3 weeks), so I won't technically be completely done with "chemo" for a year...BUT the toughest part will (presumably) be done June 7th (my last chemo appt, as long as everything stays on schedule)!!!

As many of you have noticed, I haven't updated the blog in a while. Sorry about that. Truth is, I didn't have anything nice to say. (Ya see what Thumper said up there ^ ??). I have since had 2 additional chemo treatments, and they have left me quite exhausted, and still nauseated. I was not as sick (no vomiting) since after the 1st treatment though. There were moments where I barely held it together. I have continued to work part time (my regular hours, 3 days a week). The first couple days back at work after chemo, are tough. I tire more easily, I am not able to go at my regular speed (which I would approximate at about 200 mph, but I get the job done, and I am grateful to be working). I am also grateful that I only work 3 days a week. Kuddos to the other fighters out there who have worked full time. Hats off to you!

Since we last talked, I attended the "Look Good Feel Better" workshop/class locally. http://lookgoodfeelbetter.org/  I took the day off of work so that I could attend. I still had my pixie haircut at that point, so I think the other gals in the class were confused. One finally asked me if I was in recovery, hadn't started treatment, or what? I clarified that I had 1 treatment at that time, and was waiting until I HAD to shave my head (which was to come about 1 week from that day actually). I was definitely the youngest gal in the group (I am getting used to that now). They have some donated wigs available (mostly geared to the geriatric crowd, although I took a "mom-bob" one home with me...hey - the price can't be beat! I took home a hat and a couple of scarves too.
They give you a makeup case filled with new makeup (which is nice because I am not supposed to use my regular pre-chemo makeup (any bacteria can manifest into something ugly with someone with a suppressed immune system). Have you heard that I work in a hospital and have 2 small children at home?!? LOL
Every time someone is near me and sneezes, I hold my breath (sometimes I wave furiously in front of myself as if that is some sort of defense against their cooties). I wonder how much time in the day I am holding my breath. I bet my lungs are getting really strong from it all.
You know that movie from back in the day "The boy in a plastic bubble"?  I've decided I need one of those. Wondering if John is done with his...


I took the big leap and had the hubby shave my head a couple weeks ago...into a Mohawk. It was falling out all over the place, and getting all around annoying. I was sad that the Mohawk didn't last very long. The girlies thought it looked cool. I had to shave my head completely bald a few days later. RIP Mohawk. Your badassedness lives on...

I had gone with my friend Joanie, wig shopping the day of my "Look good feel better" class. That was pretty much a disaster. I went to a local place (I won't name it, because I am hoping that she is deep down a really nice person who was having a bad day, maybe her dog died and she was in an all around miserable mood that day...yeah...that would make me feel better). Well, I did try on a few wigs, one I would have ordered (which would have been over $700 cash!), had the lady that owned the place been nicer to my friend and I while we were there. I was hoping that this was going to be a fun outing, where I could try on wigs, take pics (to post on this blog! :( She said "No pictures, these are one of a kind wigs!" (as if we were going to go and copy her design and make our own wig??), My friend touched a wig, and she barked "no man-handling the wigs" (and then talked about how the oils from our hands could soil the wigs). Blah blah blah. The point is there is a NICE way to say just about anything. This lady obviously was not versed in how to nicely say things. There are many other barking comments that I will omit. Bummer that the wig outing was, well a bummer. My friend and I went to a yummy crepes lunch afterwards, so it wasn't a total bust! :)
It's weird how having no hair now, changes SO MUCH. I LOOK like a patient now, that's for sure. there is no denying that I look like a sick person. Although I have yet to go out in all my bald glory. It is Michigan, after all - and it has been flippin' cold here. Hair is a great insulator, and not having it, is...Brrrrrrrr. I have been wearing a scarf on my head whenever I go out (usually a hat underneath too). Being bald has its benefits, and drawbacks. I get THE STARES. The stares range from "Oh, you poor thing honey" (I call that the "puppy dog face" looks), to those of confusion (and they want to ask SOOOO BAD...but they don't). Then there are those people who do the opposite of staring at me. They pretend I am not even there, they ignore me, or they think that if they look directly at me I might TURN THEM TO STONE!!!! LOL. I'm like Medusa.
I am really tempted to walk up to these people and say "HI, I'm here too!!!!", touch them somehow...see if they jump. Or whip off the scarf on my head and yell "BOO!"
Being bald is a real showstopper. Most people want to SEE IT, but they don't want to ask to see it. So, when they elude to it...I have just whipped off my scarf to let them see. LOL. You'd think I just dropped my towel fresh out of the shower. People go silent, sometimes they stutter...it. is. hilarious. I definitely do feel more naked. So I can see why maybe they would see it as a sort of intrusion? I dunno. This whole thing is weird. But, it's my life. And, at least I have a life, weird or not. So, for that I am thankful. I'm also thankful for the amount of $ I'll be saving on shampoo and hair products. It has also cut down on the amount of time to get ready in the morning - record timing now!

Chemo...dun dun dun.

Well, as I sit here the morning after my first treatment, I figured I would let you guys in on how it all went down. I'm fighting back the "queasies" as we speak. I can't decide if eating breakfast is a good idea, or a very bad idea...
So...yesterday:
I arrived at the hospital (hubby drove), around 8:30am. Blood labs were drawn (to check my blood counts, etc. to see if I was fit for chemo and surgery). Then we proceeded to an appointment with my medical oncologist (NP). She checked me out, talked with me and asked us about any questions that we had. She also went over the blood tests, and found that my blood sugar was a bit low (probably because I couldn't eat or drink anything after 6am). We then headed to the skills lab, where they went over how to give myself (or how hubby could give) injections. The nurse was really nice, and hubby felt like he could mess with her (joke). She asked us if we had any difficulty seeing or hearing, and hubby responded with "pardon me?" and "I'm sorry", as if he couldn't hear her. Har har har. It is nice to have him around to lighten the mood sometimes. She had this little practice skin thingy where she would demonstrate how to give the injection. Well, I guess the syringe that they had been using was older and had a little bend on the very end. So when she was showing how "easily" to take out the needed, the needle got caught on the "skin" of the practice thingy, and wouldn't let go! It made a little hole in it, because it was caught! The nurse was mortified, although she laughed a long with us for a while. She was thankful I wasn't one of those people who were terrified of needles or she would have had to pick me up off the floor! Hubby and I carried on about that for a while.
Next, I went to my port surgery. I vainly asked the surgeon, if he would put the incision in a place that wasn't as visible if possible. Having the scar as a constant reminder of this chemo every time I look in the mirror, I could do without! He said he'd do what he could, and try and have the scar more lateral (to the side), but he had to place it higher then usual, because of my expanders. The surgery itself pretty much went off without a hitch. I was awake the whole time (they gave me some twilight meds, that were supposed to make me really sleepy, but didn't). They did make me not care too much about the fact that they were cutting me, so all in all - not bad. I was numb for a bit afterwards.
Then...it was time to report to chemo-land. We signed in, they traded my surgery bracelet for a new one and had us take a seat. We waited for quite a while (maybe 45 minutes or so?) before they called me back. Well, they didn't take me to the normal chemo area, because I heard there was some kind of "spill" the day prior, and they were fixing the place up. They took me to another area a floor down. Immediately when I walked in, I felt out of place -it was eerily quiet. There were probably around 8-10 other folks getting chemo here, sitting in their recliners, with their significant others next to them. Some of them were napping, some watching TV. What I noticed right away is that these folks were all significantly older than I was. And a wave of..."damn-it, this isn't fair" came over me. I even had a few people that day tell me that I looked too healthy and too young to be there. I agreed. But I am here. So...here we go.
The nurse took me to my very own recliner, got me a warm blanket and asked me if I wanted a drink. I asked for some water (I should have brought my water bottle that my sister-in-law Erin bought for me. It says "Fight like a Girl". Next time, I'll remember. My port was left with these little tubes sticking out of it (since I had surgery prior, they left the access open). The nurse started an IV in my tube, and ran that for a while. Then she asked me if I felt I needed some Ativan (a relaxant, but is also supposed to help with nausea), I told her to go ahead with the Ativan. She told me that it may make me sleepy, and I was cool with that. She then put the steroids in it, and some other anti-nausea meds. Then...in came the red devil - Adriamycin. (The "A" part of my "AC" chemo cocktail, I believe). There are 3 or 4 viles that they push through with a syringe). Notice how my nurse is dressed up like a member of the hazmat team? I kind of felt like...Ummmmm...where is my protective equipment?!?

 

 

Next came the Cytoxan portion of the cocktail. It is just administered through an IV bag. It takes about an hour to run though. See that bag hanging on the IV pole behind my bed...there that bitch is. Flip her off for me, will ya? Makes me smile thinking of random readers of the blog flipping off their screen. :)

 

My port site was beginning to become painful just about as the end of my treatment was nearing. I told Adam, and he asked the nurse for something for my pain. They had to get an order for the doc before they would give me anything. We were thinking they could just put something in my IV. Nope, they brought me over a couple of "Norco" (kind of like Vicodin) pills. I took them, hoping they would help, and not cause me nausea. I figured they would be fine, as I had a couple of anti-nausea meds on board (in my IV) already as part of the chemo routine.

They dismissed us, and we drove home. I was feeling a bit queasy, but nothing all that out of the ordinary. I wondered if it was because of the chemo, the drive home (and I had been checking into facebook while hubby drove - I am not one of these people who can read in the car). We got caught in traffic, so the ride was a bit longer then planned. We had to stop for gas and I told the hubby to get me a ginger ale or Vernors or something.

**WARNING TO THOSE WHO GET QUEASY EASILY...STOP READING NOW**

As he went into the store, I couldn't hold back the waves of nausea any longer. I opened up the car door and vomited a couple of times. (I apologize into the universe to those who happened upon my "mess"). We stopped at Olive Garden to get some take out (as I thought maybe something mild like pasta and soup would have been tolerable - and I needed to eat something). Then we were on the road again. I had to have hubby stop another time on the side of the road prior to arriving home, so I could get sick. Hubby was on the phone talking to our little girls as this was happening (Hubby's brother and his wife asked to take the girls for the weekend - so nice!) I was thankful that they didn't have to see me so sick. I barely held myself together as I talked to them on the phone to say goodnight.

We arrived home. I ate some of the soup, and a bread stick...then got sick again...a few times. UGH. I took another Ativan, thinking maybe it would help, and maybe make me sleepy too. I didn't feel like it was helping much.

I decided that I would call it a night, and went to bed. I didn't sleep all that great, but that is not all due to the chemo, I am still uncomfortable from the surgery (and expanders), so it is hard to get comfortable.

 

Fill her up!

Since the last blog entry, I have had my first "tissue expansion" (T.E.) or, fill-up. Ahem...filling up my frankenboobs with saline in order to stretch the skin for the "real" things (in a silicone shell :). I have to report to my plastic surgeons office for every T.E. I was told that I would need to go in for the expansion about once every week (and that they would inject about 100 CC's each visit, depending on my pain tolerance and the amount of stretching my skin could tolerate. It's an interesting mix of people in the plastic surgeon's waiting room... I saw a couple of hand injuries, little kids that were probably undergoing reconstruction from a birth abnormality(?) It's interesting to try and guess what everyone else is "in for". I wonder if other folks do the same thing, and what they think I'M in for.
Anywho...the fill up. They have me put on the infamous wrap dress, and assume the position (belly up on the exam table). I get draped in the surgical blue sheet and they use a magnetic instrument to find the valve (I guess there are little magnetic circles within the expander, and the magnet helps them locate where they need to inject the needle.) Once they find the bulls eye, they draw a little circle, and then proceed with the injection (they use a syringe hooked up to an IV bag, and inject a little at a time, then check the progress). The injection wasn't too painful, as the valve is located on a part of my breast where the feeling is "off" (some places are hypersensitive, others are numb-like). The nurse asked me if I was ok a couple of times. I had her stop a bit ahead of her "goal", as I was feeling pretty tight. I was happy that I took a pain pill before the appt. A few hours later, I was pretty uncomfortable, and glad I had the nurse stop when I did! The next day was pretty darned painful. For those Mamas out there who have ever nursed a child, the feeling is similar to the engorged feeling that you get when you haven't nursed your baby in a while - AND DESPERATELY NEED TO.

The scene of the crime

Oh...and there's a little thing called CHEMO, that I begin tomorrow. Ugh. I feel ready. Well...about as ready as I am gonna be.  I tend to be a "planner". I like to be prepared before I do just about anything. I throw in a bit of spontaneity from time to time, but overall I feel more comfortable if I know what I'm doing! So...what's a gal to do, who wants to plan for chemo? Well...I have read quite a bit, learned some things from friends who have been there, browsed blogs, talked to my docs & nurses. I also belong to an online breast cancer support forum (kind of like facebook for "survivors". www.mybcteam.com ), and there is a great Q & A section that is great (did I mention that it is great? Ha...I crack myself up.). I found a good book online called "Chemo: Secrets to thriving. From someone who's been there" - it has been tremendously helpful. Here's an entry from a blog that talks about supplements during chemo: http://susan.chaosweb.net/2011/10/25/le-menu-du-jour/ . Speaking of supplements, that is one thing that I have also done to try and prepare for chemo. I have a boat-load of stuff I've picked up, and some stuff I take on a regular basis even prior to chemo (not looking forward to taking all of them, as I can't stand swallowing pills). I even bought some of the gummy vitamins to make it a little less daunting, and a calcium that is like eating a piece of dark chocolate. Taking all of them at once is like having a flippin' meal though, as there are a ton. The supplements are mostly to counteract/lessen the side-effects of chemo on my body. That's not even including the prescription meds I'll be taking! We picked up some of the meds that I'll be taking form the pharmacy the last time we were at the hospital. Want to know how much just the first 4 meds would have cost had I not had insurance?...$7500!! Thank goodness I have insurance.
Oh, and I got a pre-chemo haircut.  I thought getting it cut really short would make the transition to bald a little easier on my little girls (and, who am I kidding, me too!) I have a really awesome hairdresser who works out of her home. Shout out to Maradith!! She offered to cut my hair, after she found out my diagnosis and refuses for me to pay her. She did a great job, although the jury is still out on whether or not I like the pixie cut on myself. I like to change things up with my hair quite often (color, cuts etc.), but was never brave enough to have a short haircut. Hey, maybe it'll grow on me. Heh...get it? I never realized how much having longer hair was an insulator. I feel like I should be wearing a scarf and ear warmers all the time now....and boy are my windows drafty!
                              The new me:

 

The plan for tomorrow: Wake up around 5am, scarf some food and a bunch of water (as I have to be NPO after 6am.... may the force be with the nurses who have to find my vein 3 times after not drinking anything for 6 hours prior!). Get the kids ready for school (and the weekend at their Aunt/Uncles house). Leave house by 7:30am. Arrive at hospital, get chemo blood labs drawn...proceed to appointment with my oncologist doc, then go to a "skills lab" appt. (where hubby gets to learn how to give me shots the day after chemo treatments), then to another blood lab (needed prior to surgery), then my port surgery...then chemo. I am expecting to be leaving the hospital around 7pm. Such a fun-filled Friday eh?

I am planning on going back to work on Tuesday. Send me some good thoughts so that I am one of those people who can work right through chemo treatments, K? I really need to be working, as I carry the health insurance for myself, and my family. Having to take more time off would really throw a wrench in my plans...



 

 



Chemo...shit just got REAL.

So...I had an appointment with the "Med Onc" (medical oncologist) doctor yesterday. I had the appointment scheduled from the beginning of the week with the hopes that I would have my test results back about my Her2/neu status. Basically, I was told that if I was Her2 positive, then chemo would be in the cards for me FOR SURE. If it was negative, then they would have to run additional (oncotype testing), as well as factor in all of the other variables in my "case" to decide what the next course of treatment would be. My first test came back "borderline" (2+). So, then ran the FISH test AGAIN to see if the result of that would clear things up. Those test results are actually still pending at the time I am writing this post. I figured, even with the final results not in, I still wanted to keep the appointment with the Med Onc doctor to discuss the possibilities for my continued treatment, how they made certain decisions, etc. When I went into that appointment, I had one thought in my head (well, I had a million thoughts in my head - but one MAIN thought): I want them to have a definitive recommendation for my treatment. A recommendation based on my specific test results, based on science and years of experience. Worst case scenario for me would have been for them to throw the decision back on me, and tell me I had a choice in this matter. I could come to terms with ANY decision, as long as it was clear cut. No guessing. I worried about being under-treated, and I worried about being over-treated. I just wanted them to look over my case with a fine-toothed comb, and come to a definitive decision on the right course of treatment for me.
Luckily, that is what they did. I met with the nurse practitioner (NP), after getting my weight, temp and BP. The NP was awesome. She told me that she knew that there was this discrepancy with my Her2 results, and that technically that FISH test was still pending. She said, regardless of what that test comes back with, they know the course of treatment that is right for me. She said that she spoke today directly with the pathologist who looked at my slides under the microscope, and based on talking to them (as well as factoring in many other things in my case), that they wanted me to be treated with Herceptin (a drug that I knew accompanies chemo). She also told me that I would be getting hormone therapy as well (for 5 years or more). So she went over the percentages for me. She told me that if I got up and left the office at that point, never having any other treatment (just the surgery that I had already gone through),that I would have a 45% chance of the cancer returning. With the treatment that they were prescribing (chemo, Herceptin, hormone therapy, kitchen sink), that brought my recurrence rate down to 10-15%. Enough said. Let's do this thang.
The NP talked to me, the hubby and my friend Suzy (who last minute, decided to join us for the consult) about the side effects of the chemo, etc. She talked to me about how I felt about losing my hair, how I was feeling with losing my breasts. She even talked to the hubby about those things too. It was very sweet of her to acknowledge that it is definitely an adjustment, a loss that is worth grieving over, and that people can have a really hard time letting go of those things. I liked that she talked to my husband directly and asked him how he was doing with all of this. The hubby is dealing with this in his own way (his way is usually crazily talking about "how great all of this is!" - LOL) Hey, I realize we all have our own way that we deal with things (or don't deal with things, for that matter). I know he is grieving in his own way, and he is really trying to be supportive to me at the same time. I know that he has a great support network of friends/family that he talks to as well, which is comforting to me. His denial won't last forever. He just needs to come to terms with this in his own time. I have tried to encourage him to read this blog, because I know that it would help him to understand more of what I am going through (and maybe help him come to terms with some of these things too), but he has yet to read it. He says that he will read it when I am "all through with this". I am not going to push him. He will read it some day.
Adam, if you ARE reading this now - know that I appreciate all that you have done for me, and our family. I know that not all women would feel comfortable handing over the reigns of the family to their husbands...to let them be the ones to take over caring for their kids, and the household chores, etc. without hesitation, or worry...let alone having to care for me as if I were a child as well - even though I am usually the one who takes care of everyone else. But, I know what an awesome Dad you are, and I am so thankful that you take these extra responsibilities with ease, without batting an eye, and even try to put on that brave face for all of us all of the time. I know that you are hurting too, and that you are scared. I love you so very much...and I am so sorry that you have to deal with all of this.
Crap, there I go crying again.  Yes, I cry. I am normally (even before cancer), a pretty sensitive person, and it doesn't take too much to make me cry. I don't usually cry too much in sadness though, actually. I cry when something is overwhelmingly beautiful/touching.. I cry when I am so filled with love, that I can't stand it (looking at my little girls sometimes will get me going). I cry from thinking about someone else who is hurting. I have tried to allow myself to experience those moments of pity for myself, just because I realize that it is probably something healthy to do. I know that bottling up your emotions (whatever they are), is like a cancer in itself. So, when I get the feeling like I need to cry, I just do it. When I feel it coming on, sometimes I go into the bathroom, or the other room (as I don't want my girls or hubby to see my crying sometimes - as I don't want them to worry about me, or to be scared). After all, we are telling them, that I am FINE, and everything is OK - so if that is true, then why would I be crying?!? That is probably really confusing for them. It's amazing how resilient kids are though. Sometimes when I see something that makes me cry, a video online or a commercial (usually it has to do with worrying about my own mortality, thinking about my girls not having their Mom around, thinking about how sad my Dad would be without me here, or how my sad hubby would be, and how unfair all of this is for all of them), my 6 yr old daughter comes and sits with me, and hugs me. She is something else...*sigh*. I'm not gonna cry again!
Moving on. Sooooo...chemo. I'll be having chemo treatments for approximately 4 months total (2 "rounds" of chemo for 2 months each). I will first be getting a port "installed" under the skin in my chest, and that is how they will administer the IV for the chemo. (Chemo is harsh, and is really rough on your veins, and can actually burn them out - so a port is a good way to go, so I've heard).
The first 8 weeks will be with a drug combo called AC (Adriamycin and Cytoxan). I'll be getting the chemo treatments every other week for 8 weeks/2 months. I have heard that I will usually be at these treatments for about 4 hours each (although that can fluctuate). They do a blood draw when I first arrive (to make sure my white blood cell counts are high enough for treatment to occur - if the counts are too low, the chemo could kill me - so this is really important!), then I get hooked up to an IV (to my port in my chest). This AC stuff is supposed to be awful. A friend calls it the "red devil" (the color of the chemical combo is red in the syringes). It WILL make my hair fall out. Usually the hair is pretty much falling out in chunks by about 2 1/2 weeks after the first treatment. I was given a prescription for a "cranial prosthesis" AKA, wig. I am going to try and have fun with this wig thing. I know my insurance is supposed to cover one wig, but I am thinking of getting a few (one in each color or something...I will be like breast cancer's version of Clark Kent - only with wigs instead of dark glasses. 'Super Cancer Girl to the rescue!!!!" Can't you just picture the pink t-shirt now, with the "S" emblem and everything?!?
OK, back to the side effects...Heart damage can occur with AC, so they will be monitoring my heart prior to and during treatment (I am scheduled for an Echocardiogram next week some time). It can also throw my body into early menopause - yippie! Other side effects include: heartburn, a decrease in blood cell counts, pain, bladder irritation, mouth sores, nausea and vomiting and constipation. There is also a drug that Adam will be giving me the day after chemo, called Neulasta (it is given in the form of a shot). The purpose of Neulasta is that it helps rebuild the white blood cells quicker. Chemo pretty much kills off your immune system (which is why you'll see chemo patient's and their caregivers wearing those surgical masks around town, to protect them from picking up any bugs, since they have no immune system to fight them off). A side effect of the Neulasta shot is muscle aches and headaches (I've heard it feels like having the flu). Sounds fun, RIGHT?!?
The second "round" of chemo treatment is with a drug called Taxol. They will give me steroids prior to beginning the treatment to help prevent an infusion allergic reaction (chest tightness, hives, swelling of face/throat, low blood pressure, etc. etc.) Sometimes they also give another med like Benedryl or Zantac to help with these symptoms as well. Side effects include weight gain and puffiness with the steroids, fatigue with the Benedryl (One reason I would need a ride to and from chemo appointments).
Other side effects from the Taxol: decreased blood cell counts (once again - immune system is shot), hair loss (they say hair starts to grow back about 6 weeks after treatments end, but the hair does not ALWAYS come back. Sometimes, the hair loss is PERMANENT. How utterly sucky. Other side effects: neuropathy/numbness and tingling in hands and feet (this could also be permanent if not caught early), skin and nail changes (all around yuckiness), muscle and joint pain, heart burn and mouth sores, also...infertility. I am so thankful that I had the opportunity to have had my 2 children before any of this mess. I am so sad for these young women that have not yet had children and run the real risk of becoming infertile because of cancer treatments.
I will also be getting a drug called Herceptin for a year. It will be given to be every 2 weeks through an IV while I am doing chemo, then when I am done with chemo, I will need to come back for Herceptin treatments every 3 weeks for 1 year. This is a specific drug for those who test positive for Her2. About 15 years ago, testing positive for Her2 was pretty much a death sentence - seriously. But, with the drug Herceptin, it is pretty much a life-saver. This is why cancer research is so important!
My last line of treatment is hormone therapy. Because my particular cancer is estrogen receptive (ER+), I will be given  a drug called Tamoxifen for 5 years or more (there are current studies out there that say that Tamoxifen may actually be beneficial when taken for up to 10 years - but we will cross that bridge in 5 years and see what the research says at that time). This drug is given in pill form (I believe) - yippie for one less poke! Here's the Wikipedia explanation of how this works: "Some breast cancer cells require estrogen to grow. Estrogen binds to and activates the estrogen receptor in these cells. Tamoxifen is metabolized into compounds that also bind to the estrogen receptor but do not activate it. Because of this competitive antagonism, tamoxifen acts like a key broken off in the lock that prevents any other key from being inserted, preventing estrogen from binding to its receptor. Hence breast cancer cell growth is blocked."
Well...there is my treatment in a nutshell (a very long and verbose nutshell, but a nutshell nonetheless :)

Healing...

It has been about a week and a half since my surgery, and I thought I would check in with you all. I had an appointment with the plastic surgeon a couple days ago, and that seemed to go well. A tech took my steri-strips off, which is a good thing - but it also made it harder to deny my new reality...frankenboobs. I have stitches that span about 6 inches across, on both sides of my chest (with about a 4 inch gap in between). When I look at it, it kind of resembles oversized sleeping eyelids (the stitches being the eyelashes), I choose to see them as peaceful, sleeping, frankenboobs.
I appear to be healing pretty nicely, although I still have that "deformed" thing going due to the way the expanders are lying, and how they are filled. I let the physician assistant to my plastic surgeon know about my concerns, and she didn't seem worried about it. She said it may be do to a "contracture" of the expander, but she didn't think it would be a lasting effect. We won't know until they start the "filling" process.
People have been asking me how I am doing. Honestly - pretty sucky. Hurty, and sucky. I was in a great deal of pain when I first arrived home. It has progressively gotten better, but I am still in a good deal of pain. I have to take pain meds pretty much around the clock. The pain meds have 2 unfortunate side effects and I'm not gonna sugar coat it - constipation, and nausea. Yesterday I vomited about a 1/2 hour after I took the pain meds, as I didn't take the anti-nausea med along with it. Whoops. Vomiting is not fun on a regular day, let alone when you are stitched together and have these strange foreign objects inside your chest wall, pushing against your muscles (and nerves!). I feel bruised all over from these darned things. Bottom line - the expanders hurt. The mastectomy part of it, I would say is not too painful actually (I mean, there is some pain from that, but that is just that tender "boo boo" feeling, like when you have a bad cut). The expanders are the real BITCH of the whole process. They are HARD. Not like what you would think an implant would feel like. This feels like having some kind of semi-inflated miniature Frisbees inside my chest wall. I mean, the whole point of these things are to stretch out my skin, so that I can eventually get the implant, so I get why they have to be firm. But, yowzas - they are uncomfortable. I have heard from another blog, (and I may have mentioned this previously...give me some slack, I am on pain meds!) that when they get filled more, they feel like cannon balls (not at all like breasts, or implants for that matter).
So, here's the gig. Since, I am sure that some of you who are reading this, are confused/curious as to how this whole thing works (and many are afraid to ask...by the way, ask! I don't mind, really).
When I had the double mastectomy, they removed both of my breasts, the entire breasts, leaving nothing behind. Yes, that means the nipple is gone too - forever (a moment of silence for my nipples please.......). Some plastic surgery places do skin-sparing or nipple-sparing surgeries, but that was not the case with me. I was not even given either of those options. So, when they took the breasts, they could have just sewn the 2 sides of skin, etc, together and I would have been left with flat skin over the muscle and chest wall. I chose to have skin expanders put in place at the time of the mastectomy. This would not have been an option for me if radiation was needed. Luckily, it was not - so I could kind of do a 2 for 1 surgery (instead of having an additional surgery down the line to get the expanders in place). I also have 2 drains present, coming from under both of my arms (one on each side - sometimes people need 2 on each side). The drains, are uncomfortable - they tug, and are an over all pain in the ass. The tubes need to be "stripped" (sounds much sexier than it really is ;), and need to be emptied a couple to a few times a day. Hopefully these buggers will be able to come out within the next few days. I am hoping for Monday! After the drains come out, and I am healed more (a couple weeks after the drains come out), I will start the "filling" portion of this process. The expanders themselves have a port located near the top, and they will get filled about once a week with a syringe, a little at a time each week, depending on how much my skin (and my pain level) can tolerate. The scheduling of the "filling", also depends on my schedule for my chemo as well (if I will be getting chemo - and THAT will be determined Monday). The doc said that a lot of people state (before the procedure, that they would like to be a "C" cup, but once the filling process starts, and they get to a "B" - many folks call "UNCLE", and stop there. The filling process is pretty uncomfortable (so I am told). I'm sure I will fill you in (how "punny" of me!), on how that goes down the line. Once I am "filled" to the size that I want, then they schedule the surgery to replace the expanders with implants. They will be silicone shells, and most-likely saline filled (although I will be given the option of silicone filled as well - but that stuff scares me). I'll make that decision when the time comes (and once I get educated a bit more about the 2 options). I am guessing that the implant insertion surgery would be approx. 4-6 months from now. Once healed from that surgery, then I can decide whether I want nipples or not. Some women decide, that they don't care to go through YET ANOTHER procedure, and forgo having nipples all together. If I DO decide that I want nipples, they might cinch the skin at the time of the implant surgery (I'll have to clarify this with the doc). They sort of pinch the skin together, and sew it to make what resembles a nipple. Then, I would need to go and get a nipple tattoo in order to actually draw the nipple on (color it in, etc.). I would get to chose the color/shape! Isn't that funny? Sky's the limit here folks! LOL. Some women chose to get other things tattooed instead of a nipple (like a flower, a pink ribbon, etc.) That might be cool. I have seen some really pretty post-mastectomy tattoos, actually (to cover the scar from surgery). Who knows, maybe that's what I'll do...
I realize that by the end of this post, I am totally desensitized to saying the word "nipples". Go ahead, and say it - it's kind of freeing...

Mastectomy and The aftermath

On the day of surgery, I, once again, had a magnificent entourage with me (my Dad, Adam, Adam's Mom and Dad and Sister, my friends Joanie and Suzy). My friends Jamie and Patty had come to the hospital after I had already gone into preop, and came to visit after I got out of recovery.
I checked in at the hospital, they gave us a little buzzer so that we would know when it was time for me to go back into preop. Then I went to the prosthetics department to pick up a post mastectomy camisole (something that I had to have a script for, and something they previously ordered for me while at my pre-op appt the week prior to my surgery), and would be using virtually every day after surgery (it has a velcro front closure, little pockets to hold the drains, and soft prosthetic breasts to stuff into little pockets if wanted). Anyone looking to buy someone who is going to have a mastectomy a present, one of these would be awesome (unless they get one from their doc), or some open front 2 piece pajamas, loose fitting yoga pants (pulling up your own pants is TOUGH after surgery, make sure they slide easily!), pocketed zip front shirts or sweatshirts (loose fitting is best, and you can use the pockets to put your drains in), also little pillows to place under your arms when resting (they sell little heart shaped ones, or those travel/neck pillows would work great). My sister and brother in law bought me a nice care package before I went in for surgery, it included some mints, a magazine, a camisole top and a wrap top, some fuzzy slipper socks. Great idea! I had my friend Joanie pick me up some crystalized ginger (as I tend to get nauseous from pain pills and anesthesia). Not sure if this is "gift" material, but having something to keep the gut moving along after surgery would be really helpful (probiotics, Senna, prune juice, magnesium citrate, colace - something along those lines - take my word for it!!)
*I'm adding this resource here, because I just LOVE the concept. Clothing designed specifically for women who have gone through a mastectomy http://www.chikaradesign.com/flash.html
Here's a post sugery drains jacket: http://www.makemeheal.com/mmh/product.do?id=124832
I lived in my "post mastectomy camisole" for days after my surgery, but thought to myself "I wish they had these is other colors/designs or there was a way to make them cuter". Maybe I'll finally learn how to sew and design something better someday!...
Back to my surgery day...In the family waiting area, there was also an electronic board that would show the progress of the patients who were having surgery (only showed the patient number, for privacy). The buzzer went off, so Adam and I went back to preop (after I said my goodbyes to the others - and they said their own special goodbyes to "the girls"). I was told to strip down, put on the "wrap dress". All of the regular folks stopped in: the nurse who got my H&P, vitals, walked me to the bathroom (I had to take a pregnancy test - negative!), another nurse who got my IV started (the vein in my hand blew, tried another, that was also a no go, so she started one in the inside of my arm), the anesthesiologist came out and asked a bunch of questions. I was sure to let them know that I get sick from anesthesia, so they gave me a little something extra to help with that (pill form as well as putting the regular stuff in my IV). The oncology surgeon came out and taked for a minute, then the plastic surgery team came out and spent more time with me. He had me sit up straight, took a fancy marker and drew on my chest, indicating where things were naturally positioned I suppose. The plastic surgeon was going to be the one in charge of my care once the oncology surgeon did the mastectomy part, so he would be the one to follow up with me in the hospital room to check on me, approve discharge the next day. Once they said I was ready to go...they had the hubby say goodbye (I gave him a hug, kiss and probably gave him one last looksie at the girls...I can't say for sure, as I am sure that they had given me some sort of hospital version of a roofie at this point). Off I went!! Something that I had heard later, was that Adam looked at the doc( I believe it was the plastic surgeon) just as he said goodbye and said, "Good luck!", the doc responded with "I don't need luck, I've got this, do it all the time" (or something to that effect). I thought that was great. What a nice way to reassure the family.
The little buzzer buzzed after the oncologist was finished with the procedure (and indicated that the doc would come to speak with the family soon), then it buzzed again when the plastic surgeon was done with his procedure and he was to come a speak with the family, then it was to buzz again when I was ready to be seen in recovery. My friends were too impatient to wait for the time "allotted" to come back and see me, so a couple of them decided to "go on a mission" and scour the unit looking for me. (Yes, they really did).
As I was lying in bed, feeling drowsy and nauseous from anesthesia, I could hear whispering that sounded a lot like my friend Suz and my hubby. I called out to them, and sure enough it was the two of them (who now considered themselves successful on their "mission"). My nurse was none too happy about the intruders on the unit at first, but (as they usually do), they appeared to woo her over, and she let them stay. They let a couple other members of my entourage back at a time for a little bit to visit, taking shifts 2 at a time (for the most part). I cannot be responsible for anything I may have done or said while they were visiting. I have a very foggy recollection of my visitation time. I remember being fed ice chips, and wanting a whole lot more than that to eat (did I mention that it was probably 9pm at this time, and I hadn't eaten since dinner the previous day??). I'd have to say that I was pretty gracious considering how hungry I was (let alone that I just had surgery). They did, eventually bring me a meal - and I scarfed that sucker down (using my left hand, as my right had was impeded by IV wires and would set off an alarm if I tried to bend it to feed myself). I had to have my friend Joanie cut up my food for me. Accepting, and asking for assistance was not going to be easy for me - but I know this is something I cannot control. I am lucky enough to have loads of people offering to help with things right now, and I should accept that assistance, without tying to do more than I am able to, or allowed to do. This was certainly going to be a challenge.
I ended up staying the night in the operating observation area overnight. I don't think I slept for more than 10 minutes at a time - awful. Now, for many people, when they heard that I was only allowed to stay over night after having a double mastectomy - they were OUTRAGED (I have to admit, it really does seem outrageous that they are cutting off parts of my body and then rushing me out the door - BUT, a nurse said to me (and I agree), that I would not be getting the kind of rest that I needed in the hospital (with the other patients there, being constantly checked on, other patient noises, etc. PLUS, I would be at much more risk of infection the longer I stayed in the hospital. She said that as long as I had someone there to help me around the clock for a few days, I would be much more comfortable at home. I agree. Unless I had complications - there IS no place like home. Not even mentioning the discomfort of having the IV in my arm, with compression cuffs on both of my lower legs squeezing and releasing constantly, hearing the comings and goings of patients and staff to the bathroom, having my vitals checked over and over...
The next morning, the plastic surgeon came to check in on me, said I was doing really well. He kind of gave me the option of staying another night if I needed it (based on my level of pain, etc.) He also let me know that once he started the surgery, he was a little concerned about the viability of my skin in a couple of areas (possible poor vascularization, and that my skin was "thin"?), he said he made the call, and decided to go through with placing the expanders. He said I appeared to be doing well, so I am hoping things continue to go in that direction.
When the plastic surgery team came in, I believe it was the first time I saw myself "after" the surgery. Under the traditional "wrap dress" I was wearing a surgical binder since the surgery, it kind of looked like a cute little tube top (looks like the top of a summer dress...it was baby blue and had little ruffles - although not at all flattering, LOL, it did offer some support and held everything pretty tightly in place). Once the doctor opened the binder, I looked down and saw the resemblance of little breasts (kinda cute wee little things :), but my perspective was only from the top down. I believe it was the next day, once I got home, I took the binder off to get cleaned up and changed into other clothes, when I really saw my whole upper body. I'm not gonna lie. It was shocking for me to see. The sides of my breasts were definitely malformed (the left side looked to me like there was an indented hole where breast used to be - and it made me sad). I have drains that come out from under both of my arms and end in things that look like little grenades. These little grenades fill with bloody lymphatic fluid throughout the day and need to be emptied (sorry for those who just cringed reading that). Their hoses need to be "milked" (squeezed and pulled to clear any blood clots) from the tubing a few times a day. So far, my hubby and my friend Suzy have had this glorious job. So lucky to have a hubby who does not have a weak stomach, and a friend who is a nurse by my side! We have to keep a log of all of the fluid emptied from the "grenades", and once the fluid equals 30cc's or less for 2 days in a row, I will be ready to have the drains removed - and oh that will be a happy day indeed. These things are the bane of my existence. (OK, I am exaggerating a tad - but they ARE a pain in the ass). I am in a great deal of pain as well. The second night that I was home was the WORST, pain wise. I believe I only took 1 pain pill (generic Percoset) before I went to bed - bad idea. I woke up around 4am (needing to use the bathroom), I tried and tried (and tried) to get myself to the edge of the bed - and just. couldn't. do. it. I felt like a turtle on it's shell, unable to right itself. I was stuck on my back, and in so much pain, I couldn't move. (it probably would have been funny to witness, actually). I could have yelled out to my friend Suzy (who was sleeping on the couch just outside my room) but I didn't want to have to wake her if I didn't need it, and I didn't want to wake up the rest of the house. It took me a good 10-15 minutes of struggling, and pain - but I did eventually get myself to the edge of the bed (almost in tears). You see, I am not able to put any weight on either of my arms (because of the surgical precautions, and because the pain was excruciating). I am also not able to extend my arms any higher then my shoulders (while I have the drains in), or use my arms to pull up on anything. So, in order to get to a standing position, I have to use all of my accessory muscles (muscles I didn't even know I had!), but mostly abdominal, back, leg and neck muscles in order to hurl myself up. It's rough. I have 2 arms, that aren't very useful at the moment. I am thinking a good word of advice to anyone getting ready to have a double mastectomy - practice your stomach crunches, and squats. My "accessory" muscles are on fire (like it feels when you haven't exercised in a while, and then you go "all out"... a few days later, you can barely move - yup, that about sums it up (ya know, along with the pain from surgery). The bright side...I am getting extra exercise to my abdominal muscles (and I'm sure I could have used that anyways)! I may have lost my boobs, but maybe I'll gain a six-pack! Ha. <---silver lining?

Bye Bye Boobies...

So, my double mastectomy is scheduled for 2 days from right now. It is a bittersweet feeling. Knowing that I am actually DOING something to begin this fight, is a relief. I have been waiting for almost 2 months for this battle, and I am ready (I think). This cancer is a very unwelcome visitor in my "home", and it is time for it to GO. I am also very sad to have to say good bye to my breasts. This may sound like a totally vain and frivolous comment to make - but I WILL miss them. As much as the hubby tries to down-play the loss of (or importance of) my breasts, I know that he will miss them too. They have served me well these 37 years. Damn it, I had nice boobs!
(This would be a fantastic place to put one of those moving, slow motion, flash back sequences, set to music - of course...)
They have been a nuisance at times, an attention getter (sometimes whether I intended them to be or not), a confidence booster, a source of entertainment to friends and the hubby ;), a nice warm pillow for my children to lay their heads when they are sleepy or sick, a source of nourishment and facilitator to the bonding experience for my babies. I get teary thinking about how I will never again have the opportunity to breastfeed a baby again. Not that I intended to have another child (because, I think I am GOOD). But, to have that choice forever taken away now...it gets me really emotional.
I had seen other women having "going away" parties for their breasts just prior to having their mastectomy, and this sounded like something right up my alley. I told the hubby that I wanted to have a get together before the "big day". So, he and my besties got together and planned something for me. We had my "Bye-Bye Boobies" party a couple of days ago. It was a sweet, wonderful, zany and completely off-color way to say "bon voyage" to "the girls". The night was full of laughter, a really pretty (and yummy) boob cake, boob balloons, boob cake pops. My friend Joanie even made a boob-beanie that she wore on her head for most of the night (I may have worn it a time or too myself...but my memory may be a tad fuzzy from that night ;)). My friends Suzy and Joanie walked around selling 50/50 raffle tickets too (provided some of the finest entertainment around, at the same time).

They were nice boobies, amiright?

 <---Boob beanie

 

I got some beautiful flowers from our friends John & Shawn, a wonderful card (rosary and prayer card from Gwen), a robe from Katie, a bottle of wine from Meg, cards from a couple more friends (some with donations for my family included). A few strangers wandered down to the room, not realizing that is was a private party, seeing the boob balloons and signs saying "Bye-Bye Boobies!" and asked what the story was...I told them what the party was all about, and they instantly reached in their pockets and gave me $150! I had never even met them, and they were so generous. One of the women took me aside and talked to me briefly and asked me if I had read the book "The Secret". I told her that I had read that book, and thought the philosophy behind the book was wonderful. She stared me right in the eyes and said "You are going to be fine. I know this". I don't remember all that she said to me, but it brought tears to my eyes. Sometimes people come into your life and say (or do) things that take you by surprise, but somehow - you just FEEL like that moment MEANT SOMETHING. I have had a few moments like that lately. (I had a moment like that in the bathroom with my friend Lisa too, earlier that night). Whether it is some kind of divine intervention, a testament to how sappy, sensitive and empathetic I can be - I don't know. Sometimes things happen that you simply cannot explain. I won't even try to. Whether you are a "believer" or not...I have to say - I know that angels are out there. I believe that they can come in many forms, and it doesn't have to be the kind of angel "descended from heaven" like you see in the movies or something. Sometimes people come into your life, and profoundly affect you in a moment...a moment. Maybe they make you take a closer look at yourself, teach you a lesson, etc. I am thankful to have those moments and I am grateful for all of the angels in my life.
Don't you just love how I can start a post talking about boobs and end it talking about angels? I am very versatile like that.