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.

Exploring Alternative Treatments

For those that don't know me, you may not know this about me - but...I consider myself "semi-crunchy" in my philosophy about many things in my life. I dabble in homeopathy (I am not against Western medicine, but I don't like using traditional "drugs" if I can avoid them). I care about what I eat and about what I feed my family (I try to make home made food for my family as much as possible, with basic ingredients that your Great Grandma would recognize!). I breast fed both of my kids for a year. I made home made baby food. I cloth diapered. I try to avoid toxic chemicals in my home (I make a lot of my own cleansers, for example) and in my food (I eat organic a lot of the time, I love to garden/grow my own food, I avoid processed foods, I have pet chickens who lay fresh eggs, I try to avoid putting excess chemicals on my body in the form of personal care products). I try to limit the amount of plastics that I use, and how I use them. ETC...we could be here all day folks. LOL
So, finding out that I have cancer...seemed, first of all - unfair. Second, just plain mean. I have another "crunchy" friend who also went through breast cancer treatment. She told me when her brother found out that SHE had cancer, he said "If you got cancer, then the rest of us are DOOMED" (or something to that effect). That kind of gave me a chuckle. Because I have heard similar things from those that know me as well. Sometimes if you think you are doing everything right...you still get it (isn't that comforting?!?). That's one reason that I have to believe that there is a REASON that this is happening. There just has to be.

I have a tendency to explore alternative treatments for just about everything, prior to using "traditional" Western medicine. Of course, I looked into the types of alternative (or simultaneous) treatments that could be used for breast cancer. This ranged from things that claimed to "cure" cancer cells, or "stop the spread" of cancer cells, things used for pain or nausea management (as the result of traditional cancer treatments (surgery, radiation, chemotherapy), and ways to keep healthy while undergoing treatment (to battle some side effects of traditional treatments, etc.). I thought I would create a post about some of the different treatments that I have found while doing my "research". I have had MANY people send me messages or talk to me about "things I should be taking, doing, etc." So, some of those I will list as well. Now, keep in mind - I am not a doctor. I do not claim that ANY of these things actually work, or if they DO work, to what extent. I have no idea. I think many of them are perhaps worth looking into, and, hey...if it can't hurt...
**A side note: Even though I have explored these "alternative treatments", I have decided that I am going to go along with my prescribed "traditional" treatment by my oncology team. I prefer a more holistic approach, so I will do my best to balance the two. They, after all ARE the experts. You know, if I were surrounded by people who had been "cured" from cancer by ONLY using natural/alternative treatments, I may be singing a different tune altogether. And, hey...maybe some day we will!
A friend of mine said something really profound (I can't remember if I mentioned it in another post, if I did - just pretend I didn't, K?). I was asking her if she explored any alternative treatments for her cancer, instead of automatically taking the Dr.'s recommendation for chemo. I mean, I have a hard time taking REGULAR meds, or exposing myself to chemicals of any sort. With chemo, I would be injecting POISON directly into my veins. Poison that will kill the cells in my body, will make my hair fall out, will kill my immune system, will probably make me really sick, could cause a heart condition (or other lovely side effects). It's not an easy "pill to swallow" (excuse the pun).
But, what my friend said that really stuck with me, was "Do you know the number one side effect of chemo?...It's LIFE."
Whoa. That was all I needed to hear. Although, if I could somehow make my body stronger, better able to cope with the surgery, chemo, etc. I was going to do that. If I could also try to slow the progression of the disease (or stop this cancer from spreading, even a little bit), then I had to at least give the "alternative treatments" a fair shot. This became even more important to me because I was having to wait for a while before my surgery...doing NOTHING else. I am not one to lie down and do nothing, in any situation. I am fighting for my life here, and lying down is not the best position for a fight after all. My gloves are on.   Bring. It.

Alternative Treatment Ideas  (As I have more time, and hear of more, I will continue to update this list - feel free to comment and add your own ideas too!)

Supplements & food - Getting the body in prime shape is important when you are going into battle. Getting the immune system as strong as possible is one important factor. Eating healthy is important. Drinking LOTS of water is key. It flushes toxins out of the body, nourishes the cells, all kinds of good stuff! There is something called "ionized water" out there (Kangen is one brand). The idea behind this is that cancer thrives in an acidic environment. Making your body more alkaline could possibly combat this. They sell ionizing water bottles on Amazon (I thought of getting one, haven't yet though), a local health food store near me has a machine that makes tap water more alkaline, and I have bought some of the water from them (I need to bring back the glass jug to get refilled for a couple of bucks).
Avoiding bad food (processed, junk food, fried stuff, SUGAR) is another tool. Turns out, cancer just LOVES sugar. I am not one to eat a ton of regular sugar even before cancer. I have tried to use healthier forms of sweeteners (honey especially, whenever possible). Eating lots of fruit and veggies (organic if they are part of the "dirty dozen"), especially foods that are high in antioxidants. Things such as berries, mangosteen, flax, nuts (esp. almonds and walnuts), cocao (yes, that's chocolate! - but you have to find some without so much sugar, and dark is best). Oh, and did I mention WINE? Seriously, it's a scientific fact. ;)
Broccoli, cabbage and cauliflower have a chemical component called indole-3-carbinol that can combat breast cancer by converting a cancer-promoting estrogen into a more protective variety. Kale has indoles, nitrogen compounds which may help stop the conversion of certain lesions to cancerous cells in estrogen-sensitive tissues. Seaweed and other sea vegetables contain beta-carotene, protein, vitamin B12, fiber, and chlorophyll, as well as chlorophylones–important fatty acids that may help in the fight against breast cancer. Sweet potatoes contain many anticancer properties, including beta-carotene, which may protect DNA in the cell nucleus from cancer-causing chemicals outside the nuclear membrane. Others mentioned are carrots, avocados, grapes, mushrooms, chili peppers, oranges and lemons. Some spices are wonderful for their cancer-fighting properties as well - garlic, rosemary, turmeric are among the best. Green tea is great too.
(I found some of the above info at: http://www.care2.com/greenliving/27-top-cancer-fighting-foods.html)
Additional supplements: WOW - there are a ton. I caution anyone who is thinking of taking supplements to check with their doc, nutritionist, naturopath, etc. These supplements can be very concentrated, and some have precautions that you need to be aware of prior to taking (or mixing and matching). I also found that you have to be careful when taking certain supplements prior to surgery (as they have a blood thinning effect and can make you "extra bleedy" (yes, I made that up) during an operation. Other supplements should not be used while getting chemo, because they can block the chemo from doing its job most effectively. Things like antioxidants, which are typically a good thing, are NOT while having chemo.
SOME of the supplements that I have heard about (at least a few times):
Probiotics. These are the good bugs, needed for a healthy immune system. Plain and simple - they are good. Go and get your self some.
Reishi Mushroom and Coriolus PSP from the brand "Mushroom Science": anti-tumor properties.

Flora Flor-Essence: detox blood lymph

Pure Essence Breast-D: breast tissue restoration anti-tumor
Cat's Claw: anti-tumor
Quality of Life Kinoko Gold AHCC: anti-tumor increases white blood cells and NK cells
Enzymatic Therapy IP-6 & Inositol: Boosts NK cell activity
Europharma Tumeric Curamed 750mg: anti-tumor chemo-protective
Astragalus Supreme: helps immune system
Hoxsey Red Clover
Caisse's Tea (an herbal detox tea)
N-A-C Sustain: antioxidant, supports liver and lung function
Soursop (also called graviola): A fruit, grown in very warm regions, but can be found in pill form. It states it has the ability to target the damaged cells and kill them causing a balance in the cycle of cell growth and development. Side effects that I have seen are the possible development of a movement disorder (perhaps in higher quantities?).

Medical Marijuana. Yep, I said it. Interesting how this plant can often stir up emotions in people so readily. BUT, I can't NOT mention it. As it has been mentioned to me OFTEN since my diagnosis. "Hey, do you smoke? - cause you should look into medical marijuana" or "Hey, you should get your medical marijuana card. With cancer, you're a shoe in!...Hey, there are not many perks to having cancer - this is one of them!"
Medical marijuana is often used as a pain reliever for folks who have pain associated with cancer and cancer treatment. Sometimes, people have a reaction to traditional pain meds (nausea, vomiting), and MM (that's Medical Marijuana to those "in the know") does not have those side effects. I have heard it is also an effective anti-nausea med and can assist with appetite issues for those that are not able to eat appropriately due to cancer or cancer treatment (the munchies!! - Ha, makes sense). I think there is such a stigma for this particular "alternative treatment", partly because many folks think that people who use MM are only doing it to "get high". Yes, there is that (but not always, actually). There are forms of MM that have less THC (the part of MM that creates the "high" feeling), and some that have none at all. There are some pretty recent studies looking at the cancer-fighting properties of MM. Specifically a component of cannabis called "cannabinoids", that have been shown to possibly stop or slow the progression of breast cancer cells. I wish there were larger scale studies looking more into this. I also think that there should be better regulation on MM. More specifics as to proper dosage, types, more stringent screenings prior to being able to give someone their MM "card". It's pretty easy to get here in Michigan, and I don't think it should be. I think the people that are scamming an ailment just to get high, make a bad name for something that could be really helpful for some people.

Accupuncture, Reiki, Massage, Yoga, Meditation, etc....things I will explore later. I need to get off of this computer and get some things done! :)

A new year!

Happy New Year everyone! I hope it is happy and healthy for all of you!!
I haven't blogged in a while for a number of reasons. I was in a bit of a funk for a few weeks because I had been going back and forth with the hospital to try and get an ASAP surgery date scheduled for my bilateral mastectomy. In mid December, they told me that they had January 30th as a tentative date for the surgery. To which, I told them NO. I got so upset by the whole ordeal that I turned over the reigns to my hubby to deal with all of the phone calls from the hospital. There was A LOT of playing phone tag, as this was the holiday season after all, and it seemed as if EVERYONE was on vacation! Looks like I picked the wrong time of the year to get cancer! I was getting so stressed out, that I knew I was going to have a breakdown if I continued to try and do it alone. My poor hubby though. When he was telling me that January 30th was the only date that they could fit me in, I simply said, "you tell them NO, I do not accept that date, they need to keep trying!". Poor guy, was like "ummmm....ok...you just want me to tell them that you said "no."? Me: yes.
The main reason I was so upset with having to wait until Jan 30th was that, waiting for THAT LONG without getting treatment of any sort (WITH CANCER POSSIBLY SPREADING IN MY BODY) just did not seem acceptable to me. I was diagnosed at the end of November. That would mean 2 months of having CONFIRMED cancer in me, and not being treated. (Who knows how long before that that the cancer had been in me). So when the medical personnel from the hospital would try to reassure me that breast cancer is usually not a quickly spreading cancer, and that waiting another month would be just fine. I reminded them that I HAVE NO IDEA how long this cancer has already been in me, for that matter (possibly a year??) Yeah, yeah...I had the sentinel node biopsy and had to wait until the results came back from that before they could schedule my surgery. But STILL. It is really hard to wait patiently and do nothing, knowing I have cancer in me. I have thought on numerous occasions "Someone hand me a flipping scalpel and I'll take care of this mess myself!" (OK, no - not really. But, you catch my drift.)
Another reason that I was desperately trying to get in to have surgery, was that I had scheduled a trip to Disney World for my little girls (the hubby and I were tagging along as well) - it was their surprise Christmas present this year! :) None of us had ever been to Disney before, so this was something that was going to be extra special for all of us. Also, my girls are at the perfect age for Disney. My 8 yr old is just starting to question the "magic", so I think right now is the perfect time to reignite her belief in that magic, before it's gone forever. With the price of Disney, there was a good chance that this may be the one and ONLY time that we will get to go to Disney as well. I was planning on surprising my girls on Christmas morning with the news. This was their BIG Christmas gift. Back at the beginning of December I had told the docs that I had this trip planned and they reassured me that it should be fine, and I should be able to get the surgery done and over with (and time to heal) before the trip (which was scheduled for Feb 3rd). Well...that did not happen. After pleading my case as much as possible, the surgery was scheduled for Jan. 29th. *sigh*

Here's the video I took of my girls getting their surprise gift:

https://www.facebook.com/photo.php?v=10151211246058940&set=vb.741708939&type=3

So, just after the new year I had to officially cancel my Disney trip. I was heartbroken. I didn't have the heart to tell my girls that now, because of my surgery date, and who knows what treatment I was in for after the surgery (chemo or whatever), I had NO IDEA when we would be able to go. Many people said "that's OK, you can just go after you have healed from the surgery". Well...no. I did not want to wait until after I healed from the surgery. When you find out that you have cancer - putting off something (that was so important to me) was not an option. You. just. never. know. I am not going to go into that dark place where I start to talk about the possibility of not being around next year. Just know, that this is something that NEVER leaves my mind now. Not for a minute do I NOT think about my own mortality. I live most of my day trying not to FOCUS on that fact, but it is always there. I just choose not to concentrate on those things. There's the proverbial "hey, anyone could die tomorrow - you could walk out that door right now and get hit by a bus or something!" (OK, maybe that wasn't a real proverb - but whatever). Basically, don't put off for tomorrow what you can do today.

I decided I was going to try my hardest and see if I might be able to get a last minute trip to Disney before my surgery at the end of January. I scrambled, checked the prices online and they were crazy expensive! I had originally used a special that they were running a few months ago, and had a good discount. That discount expired Dec. 31st. Damn it! I called Disney, pleaded my case. They told me that there was nothing that they could do for me. :( I pleaded some more, then asked to talk to a manager. They put me on hold for a LONG time, finally came back and said that they would give me the same special that I had prior, but with all of the fees to "rebook" my flight, etc. I was still going to be paying over a thousand $ more than I was originally paying (which was a awful lot to begin with!). Whatever. I was not going to let that get in my way to do this trip for my girls. I would figure out how to pay for it later. So, then I discover that my credit card had EXPIRED. I called the credit card company for them to rush me out a new one (I guess they had sent me one a month ago, but I never got it.) I didn't sleep well that night. I woke up early the next morning and called the credit card company back and pleaded with them to reactivate my card temporarily - and they did!
I booked the Disney trip! I may not be able to get them into the special character dinner (at Cinderella's Royal Table) that I had planned on the previous trip,or some of the other "extras", but it will still be wonderful. I plan to surprise my girls (ONCE AGAIN) the morning of the trip, they will think that they are getting up for school, and I will tell them we are going to Disney instead! I am excited to be able to surprise them yet again. :)
A couple friends saw the issues that I was having with scheduling the Disney trip, and realize that I will probably be having some whopping bills coming my way in the near future, etc. My Bestie is spearheading a fundraiser/Zumba benefit for me to offset some of my costs. Isn't she the BEST?!? Here is a link to the Facebook page that Joanie set up for the "benefit", in case you want to check it out: https://www.facebook.com/events/327777957338125/?fref=ts
This is scoop according to Joanie:

OK WE HAVE A DATE AND TIME!! Sunday Feb. 24th doors open at 5 (Silent Auction 50/50), at 5:30 there will be 90 min ZUMBA Class with Guest Z-Instructors that I wanna be like when I grow up ;) !! and ME TOO!! Thank You Kim McCalla Ladd and @BRIGHTON COMMUNITY EDUCATION!! They are donating the facility, This is a ZUMBA try-it class/benefit. COST: $10 if tix are bought ahead (link to come) or $12 at the door. SOOOO GEEEEEKED!!!!!

My friend Becky (the one that came over my house after I had been newly diagnosed and spoke with me, my hubby and Dad), is also getting together a silent auction for the Zumba benefit as well. How awesome are my friends? Right?? This is a separate page for the silent auction stuff (my friends are crazy organized!) :) https://www.facebook.com/events/327777957338125/?fref=ts#!/events/392560474166751/?suggestsessionid=7417089391357591865

I totally don't feel worthy of a "benefit". It still feels like this is happening to someone else. I have been to quite a few benefits myself, some for people that I didn't even know. So I know how great that feeling is, when you "give" to someone for a good cause. It feels so strange to me to be the recipient of something so wonderful. I know that my friends NEED to do this for me (When you are feeling so helpless, you want to DO something to help in some way - and this is one way), so I am certainly not going to try to take that away from them. I am honored to have people to care so much about me. It makes me feel grateful for what I have. I know that there are women going through this that are all alone. They may not have the awesome friends or support network that I have, they may not have a supportive husband. I wish there was a way that I could help them too... Maybe some day I will.