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Saturday, February 16, 2013

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 :)

6 comments:

  1. You have always been an inspiring person to know. Getting sick has not diminished that in any way. I'm lucky to know you. Best wishes for much happiness and healing on this journey ahead of you...

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    1. Such kind words DeeDee...<3 You are pretty inspiring yourself!

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  2. You got this Girl!!
    Sure it is a boat load of stuff coming down the pipe line at you but remember the hurdles I told you about? YOU JUMP THEM ONE AT A TIME!! Day after day!
    I was Her2 positive too but no Herceptin was available in 2002 because it was still in clinical trials. I know about 50 women who have done just fine through it....piece of cake. The AC is a bigger hurdle...get ready to jump high! I never got sick one time (I am pretty proud of that you can tell! lol) I just felt like I had the flu for a couple of months. FORTUNATELY....The meds are better now and looking back now I should have pushed for the Pot!! I probably would have felt better. :)
    Remember I am celebrating my 12th Year of Survivorship this November! YOU TOO will have many celebrations in the years to come!! So go ahead and cry when you feel like it... I shed many of tears. But jump for joy every chance you get!! You will experience joy like no other the last day you walk out of treatment!! IT IS AN AWESOME FEELING! But you gotta get through all the other challenges first. SO know that I am PRAYING for you everyday!!! YOU MY FRIEND WILL PERSEVERE!!!
    God Bless You!!
    All my love,
    Becky Cwiek

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  3. Thanks for writing about all that you are going through Angela. You are inspiring! (There is a really awesome wig shop in Waterford on M-59, they are not very expensive and have about every style and color you could ever want) It is right before you get to Alpine. Could be a fun girls day/night out.

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  4. Angela- It's amazing to read about your journey. I love to hear you talk about how it feels especially as a mommy and a wife. I just can't imagine. I'm so glad you have that support system; and that they have you. Thank you for sharing in such an open and honest way. I continue to keep you in my thoughts and prayers.

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  5. Hi Angela! I got my diagnosis on Sept 13, 2012. I just finished chemo. I only needed 6 rounds of AC. I was lucky enough to have mild side effects. I found reflexology to be very helpful. I would have it done the day before and I really feel that it helped to mitigate my side effects and reduce my stress. It will go faster than you think. Good luck to you and God Bless.

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