Pre-Poison Update

I last updated after physical therapy, which was exactly a week ago today but feels as if it happened months ago. I feel like this entire experience has created some strange time warp (or time suck, with an emphasis on the "suck").  In the past week, the tumor board met to discuss my case again (this time with a focus on radiation and which type of chemo cocktail), we met with the radiation oncologist (Dr. Papagikos), had the port placed, had an awesome pre-poison party at mom's house, met with my medical oncologist (Dr. Kotz) so he could be sure that I was ready to start chemo, and had the first "filling" of my breast expanders.




Chemo starts tomorrow. The anticipation is absolutely killing me. Maybe I should find a different way to phrase that... Anyway, with that in mind, this post will be just an update of the details with very little of the real life that I usually like to include. Time is of the essence as there is so much to get done before the impact (if any) of chemo sets in. Here's the news:




Tumor Board: All agreed that I should have TAC for the chemo, which is actually administered as ACT (in that order).  They also agreed that I should have radiation, which I'll cover in more detail later in the post. First, a look at my chemo protocol:




The Adriamycin comes first (well, after they've infused a steroid and some anti-nausea meds) and takes about 5 minutes to drip into the port. Adriamycin is red, often referred to as "The Red Devil" and will make my urine red for a few days. My urine's already been clear, when I drink enough water, and blue from when I've had the radioactive dye, so it would seem I'm shooting for patriotic pee. Yippee. Adriamycin is likely to cause pain at the infusion site and nausea/vomiting, but I'm told nausea and vomiting are rare these days because the docs all have great meds to prevent that and they automatically give them since this side effect is so common. Those are the immediate effects. Later, it's likely to cause low blood counts (white and red) which puts me at greater risk for infections, anemia and/or bleeding. Onset for this is day 7, with the lowest points (the nadir), for this drug, at days 10-14. Mouth sores are also a possibility and hair loss is likely to occur between days 14 & 17.  Darkening of the nail beds, problems with fertility and watery eyes are all additional possibilities.  Long terms effects of this drug include developing a blood cancer (such as leukemia) and heart failure/permanent damage to my heart. At least my Mugascan indicated that I am starting out with a really great ejection fraction, so my heart seems to be in good shape, despite my paranoia over palpitations and irregular heart beats.




Next is the Cytoxan, which takes approximately an hour to infuse. Nausea and vomiting are likely within the first 6-10 hours after the infusion, but again, they have and give such good meds for this that it really isn't that likely. It is likely to cause low blood counts (white, red and platelets) with the same onset and nadir as the Adriamycin. Again, hair loss is likely to occur between days 14 & 17. Poor appetite and a metal taste in my mouth are likely. I've been advised to combat that side effect with plastic utensils. Diarrhea, black or tarry stools, mouth sores, loss of fertility and darkening of the skin and nail beds are also common reactions. Less common, but possible, is hemorrhagic cystitis, which is a painful bladder irritation and bleeding of the bladder.  Long term, blood cancers (leukemia) or myelodysplasia (think Robin Roberts from GMA) are possible.




Taxotere is the last part of the infusion. It drips for an hour. All of the shorter term possibilities above are also likely from this, but the onset and nadir comes faster, with an onset on day 4 and a nadir (lowest point) from days 5-9. Also, add severe flu-like symptoms (fever, which means infection, chills, nausea, vomiting, diarrhea, exhaustion) plus bleeding (mostly mouth and nose), bruising and severe bone pain. Taxotere causes fluid retention and allergic reactions, which is why the day before and the day after treatments, I have to take 4 steroid pills, and they infuse steroids before I begin the chemo treatments. Peripheral neuropathy (numbness in fingers and toes) may also occur, along with fatigue and weakness (which is another common thread for all 3 toxins).




The day after chemo, I'll return for a shot of Neulasta, which I REALLY want to call Nutella. I think I'd much prefer a chocolaty hazelnut spread rather than a painful shot that stimulates my white blood cell production. I've just recently heard that this is a painful shot. I'm curious as to why. Do they inject it into my bone?  God, I pray not!  Anyway, after that, I have 21 days of relatively uninterrupted time to get back to normal before we do it all over again. I'll have a total of 6 infusions over a course of 18 weeks.




Radiation Oncologist Meeting: Dr. Papagikos said that everyone is in agreement that I'm a candidate for radiation for 3 main reasons (and they are linked). First, because I am young. It seems that because I have a longer life ahead of me (happy that!) the potential for recurrence is greater. I think.. Hmmm...  Second, because I had a positive node.  If I were older, they'd want 3-4 positive nodes before radiating me. But because I am young, they only need to see one positive node to want to radiate. Third, because my tumor was so big. When they removed it, they found it was 5.5cm, when they originally suspected and measured it at 3-4cm. Anyway, it's big and growing at an intermediate pace. Also, remember that I had two other nodes with clusters of malignant cells, just not enough of them to officially call them "positive". All of this put together means radiation is going to be part of the treatment plan. The question now is when.  Both of my oncologists prefer I finish chemo, wait until my blood counts return to normal (about a month) and then start radiation. I would have to go everyday, Monday through Friday for 6 weeks for about 15 minutes of treatments and meet with the radiation oncologist once a week to check on my side effects and status. Most likely, radiation will cause burning, redness, irritation, and blisters on my skin (picture a large rectangle from my armpit to the center of my chest on the left side). Also, it will make me feel tired, though I'm told that the tired from radiation isn't AS tired as the tired from chemo. Wrap your head around that for a minute. Radiation causes permanent damage to the blood vessels/blood flow to the area which can impact my skins ability to heal. If I have surgery in the radiated area, ever, I am at risk of issues with healing. Thus, if I wait and have my reconstruction surgery (to remove the expanders and replace them with the silicone implants) after radiation, it could fail, and/or put me at a higher risk of infection. Also, I'd have to go without the nipple replacements surgery because my plastic surgeon won't do it (or any other additional surgery on the radiated area that isn't absolutely necessary), instead heading to a 3D tattoo artist in Baltimore who's the bomb-diggity when it comes to 3D nipple tattoos.  If it fails due to infection or problems with healing, then I have dealt with all of the discomfort and pain of the reconstruction (and cost) for nothing, because the implants will just be removed and I won't get to have breasts (at least not ones attached to my body). If I have the reconstructive surgery first, followed by 4 weeks of healing time (a total of 8 weeks between chemo and radiation), I am basically giving any remaining microscopic malignant cells 8 weeks to grow and gather, which could lead to a recurrence. My friend, Andrea, pointed out that maybe the cells left over after chemo (if any) are the really strong ones (because they've outlasted chemo), and giving them 8 weeks to grow and multiply doesn't seem to be a good idea. I'm torn. I'm ok with never having breasts again, but not ok with having chosen this route only for it to fail because of a subsequent treatment option I chose to do. I'm not ok with not healing and getting infections. I'm also not ok with giving the cancer, if there are still any microscopic cells there (which the doctors are all operating under the assumption that there are) the opportunity to make a come-back. Really not routing for the underdog here. At least I (we) have 18 weeks to figure all of this out.




Port Surgery: Well, I was already anxious about this going in. Not a fan of having foreign objects in my body. I was supposed to go in at 1 and have the surgery at 3, but they called and asked me to go ahead and come in by 9. The morning was a crazy rush and Doug was at work for a training or meeting and couldn't leave right away. Luckily, mom was able to leave work early and come be with me before I went in for surgery. I've been getting really anxious about each new step, finding that my blood pressure is higher than it's ever been, my breathing gets all crazy and I start freaking out about getting IV's placed, which was never a problem until they started failing to place them on the first try, which really While everyone seemed rushed, it went very well. Dr. Weinberg came in to visit with me before the procedure and she has the greatest, warmest smile. She really helps to put me at ease. I decided it wouldn't hurt to ask her if she'd be willing to break up some of that cording/scar tissue in my left arm while I was under anesthesia and she agreed. When they woke me up after the procedure, they asked if I was in pain. "Nope," I replied, and then, "Oh [lifts and moves left arm all around] yes!!!  She did it!"  I still have some cording left to deal with, but I have a HUGE improvement to the range of motion and level of pain in my left arm. Amazing!  She worked hard on the cording, especially the huge clumps of it in my armpit.  If I wasn't already in love with her, I definitely am now. She said the port is placed as deep as she could get it so it wouldn't protrude too much. The area is very tender and I am having some pain and a pulling feeling every time I try to move my neck. I hear that will get better with time. I hope that's true. Otherwise, port surgery was a double success!




Pre-Poison Party: So, earlier in the week, mom had the idea that we should take a moment and really celebrate all the healing so far, at a time when I still felt like being social. She planned an awesome party and invited so many wonderful people. It stormed something fierce that evening. In fact, we were under a tornado watch and a severe storm advisory for most of the time. Still around 60 people attended the party, most traveling 20-30 minutes to be there (in the storm), some out-of-towners, too. It was an amazing turnout. Great food, lots of laughter, great friends, support and encouragement. I felt so incredibly uplifted, I'm not sure I can do it justice with an explanation.  My friend Beth said, with the greatest sarcastic smirk, "Girl, NOBODY loves you."  LOL. I really felt it.  I am so lucky and so blessed to be surrounded by such an incredible support network. I can't say it enough; thank you! My core support team (Doug, Charlotte, Mom, Bob, Dad, Delia, Maxine and Robert) are amazing and I'm incredibly blessed to have them. But then there are so many others, I couldn't possibly name everyone, who call, text, visit and find all sorts of way to encourage, support, and help us. I'm truly touched by the overwhelming outpouring of love! Thank you.






Visits with Dr. Kotz and Dr. Kays: Dr. Kotz, my medical oncologist, wanted to visit with me to make sure I was ready to start my chemo regimen and to confirm, once and for all, that TAC was the route we were taking. He is always so patient and informative. He's cleared me, otherwise no news. Then it was off to Dr. Kays, the plastic surgeon. I was anxious about my first fill, and when I saw the syringe and needle they use for the fill-ups, I started to cry. Doug was awesome once again, goofing around to make me laugh rather than cry. In the end, it didn't hurt, as promised. Maybe it was mildly uncomfortable when he filled my left side, but I felt nothing when he filled my right one. Afterward, I was tender. It kind of felt like when a new mom gets her milk, but not quite as fast or severe. Tender. I was sore and very tired by about 4:00 and in bed early, which is likely to be the norm for me around here. Good thing Doug is good at the bedtime routine. He's a great story-reader!


I'm sure there is more to share, but for now, I'll sign off. Tomorrow is the big day!  I start my chemo at 8:30 am. I pray that it's uneventful. I pray that it doesn't live up to the anticipation. I'm looking ahead with anxiety, but really hoping that all I get is a little tired and weak. Tonight as you go to sleep, or tomorrow as you start your day, will you say a little prayer too?


Oh, I was turned on to another blog written by a friend of a friend and her story is really inspiring and incredible. She's battling so much more than I am, with such grace and hope. Check out her blog if you get some time at anncredible.com  Thanks!


Oh, one last thing. Hair loss in t-minus 14 (-17) days. I promise to get better about posting pics! xoxoxo