- Note the new counter at the top of my blog page! Only 2 more Herceptin treatments!! (Read prior post if you forgot what that is)
- Even though Herceptin wasn't supposed to have any real side effects, I began having trouble with it pretty early on. As soon as the drug would begin dripping, I immediately felt shaky, weak, nauseated and like I was going to pass out (they say it is like an anxiety attack). Through trial and error, the doctors and nurses came up with a combination of things for me to be able to get the Herceptin without any problems at infusion. I have to take anti-anxiety medication, then they drip some steroid first, then start off the Herceptin at a much slower pace, then speed it up after 10 minutes.
- The rest of Spring semester went really well. I continued my right arm rehab and regained full range of motion. It is still weaker than it was, and the back side of it remains numb from the surgery. This is "normal" and it may remain numb forever, or sensation may come back. The same is true under my right arm where they removed the lymph nodes. I still watch really closely while I shave because I can't feel the razor blade. Such a weird feeling!
- On April 1st I went with a friend to a hairdresser who has a mini salon in her basement. She has cut other ladies' hair and shaped it as it grew back after chemo. Even though I had so little hair, I really wanted to get out of the wigs. However, I really didn't believe that I would be mentally ready to let go of them, even as I went into that hair appointment. BUT....she tapered the sides and the best part was she put some color in it (it looked to me like there was a lot of grey in there before!) and I somehow was brave enough and boosted up enough by these two ladies, and then by Chris when he saw it, that I just thought...to heck with it!! And even though I planned to keep wearing the wigs until my hair was longer, I braved the carpool line without my wig that day and I felt like there was a flashing neon sign over my car saying, look at her and her hair, but I tried to stay rational and remind myself that it's not all about me and that I was being ridiculous to be obsessing over my hair and what people think so much. Once I got over that silly mind game, then I was fine.
- So basically, from Easter onward I was finished with the wigs!! This was much earlier than I had ever imagined, and it was incredibly freeing to be without them. I couldn't believe all of the compliments I received. I think people were just being nice, but regardless, I WAS looking a lot healthier, because I was able to start exercising again, spend a little more time outside and that little bit of fresh air and sunshine make a huge difference. And, I was cooking family meals again, and we were really back on track with nutritious food. We were not perfect by any stretch, but I was following the guidelines that the Cancer Nutritionist gave me, and things were rolling along really well.
- I continued my 12 weeks of prescription Vitamin D, and then another blood test showed that my Vitamin D level was finally within normal range. Big yay! Remember friends, when you go in for your physicals, ask your doctor to check your Vitamin D level. Even my oncologist didn't check mine without me asking. Low D levels have been associated with all sorts of cancers. I now take over the counter daily D supplements to maintain my normal range.
- I continued to see Dr. Woods, my plastic surgeon, and get my expanders filled. That was interesting, and we had a few issues with lopsidedness, and trying to figure out how you want your new chest to look, and trying to compare what the tissue expanders look like versus the final implant. The doctors know exactly how much was removed during the mastectomy, but that doesn't necessarily translate to putting that exact amount back because the shape is different. Anyway...we worked through that and I finally made a decision that we were "there." I had not realized that the expanders needed to stay in place with their final input for at least 6 weeks prior to switching them out for the final implants. So, that time frame took us to the end of the school year and so I ended up going on our fabulous "reward" trip to South Africa with the expanders. At first I thought this would be an issue, but it wasn't at all. Again, as far as cancer and mastectomies go, I sort of got "lucky" in the sense that the expanders didn't really bother me at all. They were a little too wide for my chest, and in certain positions I didn't like that it felt like they went under my arm a bit, but overall I didn't spend much time thinking about them or being troubled by them. Apparently, many women are uncomfortable with them, so again, I consider that another thing to be thankful for.
- My regular echo cardiograms kept coming back normal, and that was also great news. In previous posts you might recall reading about the heart risks associated with my first chemo cocktail and then with the Herceptin. I believe I have another echo coming up after I finish Herceptin, but I have no reason to believe that it will show any damage either. The only thing that changed about the echo cardiograms is that the technicians are not able to get good pictures of my heart with either the expanders or the implants, so I have to have an IV (if you are new to reading this you can go back to one of the very first posts and read about how ridiculous I am at getting an IV put in) so that they can put a color dye in my blood stream so that they can see my heart function more clearly. Ugh. I really, really do not like any of that, but I understand it is part of the process and I am actually getting better at it. Last time, I didn't even come that close to passing out, though they did keep telling me to breathe normally or I was going to hyperventilate. I always feel sorry for my nurses. :( But I am really super nice to them.
- April was a good month....attended the Whitefield auction with my new hair, and a couple of weeks later we had the much anticipated Pink Party at our house. I absolutely loved that evening. I wish I could have invited every single person who prayed for me, encouraged me, hugged me and held me close int heir thoughts. As it was, I invited everyone local who drove me to chemo, held my hand, cried with me, showed up to walk/talk with me, cooked meals for our family, and who watched the kiddos and drove them when we couldn't. It was our way of saying "THANK YOU" to these friends. We had about 60 people show up in pink at the house, and even though I haven't been indulging in adult beverages at all much anymore, the cocktails were flowing, and we had hired this duo that I love to come and play for us and they totally rocked, and then I had fun making a playlist of songs that meant something to me and that were danceable, so the evening was exactly what I hoped for. I looked around the house and it was filled with warm, loving people who cared about my family, and I stood amazed at this total curve ball that had been thrown at us, and yet here we were, in a good place. Chris surprised me by making a speech that moved me, right when I had planned to get up and say a few words of thanks. He said it better than I would have, I am sure, and I was happy and thankful beyond measure to have him and all those people (and many not present that evening!) on this crazy journey with me.
- May felt like a regular May, other than my Herceptin treatments. They seem to accumulate and each one hits me a little harder than the one before. Basically, I am able to drive myself, but I am feeling really drowsy and tired by the time I leave (often dozing through part of the infusion), then I arrive home and that is all she wrote. I set my alarm to pick up the kids, drive the 5 minutes to get them, then get back in bed. The next day I usually spend napping and laying around because I am so very tired, weak and achy. But, usually on the 3rd day I can get up and get going and things fall back into place.
- I could write pages about our Africa trip, but suffice it to say that it was a dream trip, and we enjoyed planning it. During some of the very dark days, thinking about it was so uplifting, and to finally have it happen was almost unreal. I feel so very blessed that we were able to do such a thing, and to make that memory with Chris and the kids was truly priceless. There were numerous "special parts" but for me, the top highlight was the safari aspect. For me it was all about the animals from the very beginning. For the last five nights we stayed in a game lodge and our schedule was wake up at 5:30, coffee at 5:45, start the AM safari at 6:00, stop in the bush somewhere around 7:30 for true sunrise and enjoy more coffee/hot chocolate and breakfast goodies then continue in the bush, tracking various game until about 9/9:30. Upon return we had a hot breakfast then free time (pool, bush walk with guide for the adults, sitting on veranda that overlooks water hole and watch the various animals arrive to drink....I could do that all day long) until lunch at 2:00, then load up for the evening safari at 4:30, stop in bush again at sunset for a "sundowner" (cocktail or beverage of choice) and appetizer, continue the safari in the dark with the tracker using a spotlight to seek out predator animals (remember it was their winter so it got dark at about 5:30/6), then arrive back for a multi course outdoor dinner around the fire under the stars at 7:30. It was exhausting but amazing.
- Upon return from our trip, I had my "switcheroo" surgery (take out expanders, put in final implants) on June 29th. My original cancer diagnosis came on June 30th, 2014, so I thought the "full circle" aspect was interesting. Though I wasn't completely finished with my treatments, it felt like this was the last big hurdle in this long process, so it felt appropriate and a little symbolic that this step happened on the last day of my "year of cancer." I had the terrible drains again - big boo - but at least we had learned quite a lot from the prior surgery and I even remembered to make sure they didn't use that one adhesive that gave me hives last time. Ugh...that was terrible. I had to keep the drains 9 days, so that was a whole lot better than 20 or 21 last time.
- Recovery from this was much easier than the mastectomy, but I had underestimated it a little. My lymph nodes were not involved, therefore my arm was not affected as it was with the mastectomy, so that cut recovery time a lot. However, it took a little longer for my chest muscles to recover than I first thought. It's amazing how much pressure it puts on your chest to pick up a gallon of milk. Or to turn a steering wheel. But, I was back up and running in just under two weeks, and with two more weeks I could start really putting significant pressure on my arms (push ups, etc.)
- The last two Herceptin treatments remain, then I believe I have a minor surgery to get my port removed. That will be a big deal to me, because even though I don't really feel the port, I don't like seeing it, I hate that I had to have it, and it affects my clothing choices, the way I wear my seat belt and it really does hurt to accidentally bump it. I will be a very happy camper to get it OUT of my body.
- Here are the question marks......there are two drug trials that Chris and I are keeping tabs on and for which we believe I could be a candidate. One is tied up in a lawsuit and on hold at the moment, but involves a vaccine for my particular breast cancer (HER2+, ER-/PR-). The other is ongoing, run out of Birmingham (which is a doable, drivable distance) and is aimed at women just like me...post surgery, post chemo, post Herceptin. There is a drug similar to Herceptin (that suppresses the body's production of the HER2 protein the feeds my cancer (if there is any left in my body or if my body makes it again....these are my very real fears)), that seems to be well thought of, but its side effects are very troublesome. The trial would give me access to this drug, but the trial is actually testing a second drug and its ability to control the nasty side effects of the first drug (stomach issues, to the point of hospitalization for many women). My oncologist does not think I need to "go there" but I am not 100% convinced. Chris seems to agree with the dr. Frankly, I am scared to go off the drugs. I like the idea of continuing something...at least trying. This is currently in debate at our house. There is no clear answer and I don't think there is a right or wrong choice. Chris is ready to "move on" and put cancer behind us, and being part of a trial does not do that. I get that. However, a trial means that I have a doctor paying close attention to me. My blood will be checked more regularly than otherwise. Maybe the side effects won't be so bad. Maybe the new drug can control the side effects. Maybe the drug that gives the bad side effects will do other good things in my body. Who knows?? My oncologist says that he believes we have been successful. We have followed protocol. But my mind keeps going back top all the things that DIDN'T go as predicted. No one thought that the irregular mammogram would be cancer. It was supposed to be a calcification. Then when it was cancer, it was estimated to be smaller than what it was, thus forcing a mastectomy (or another lumpectomy). Then when they tested whether it had spread to my lymph nodes, it looked like it hadn't, but then during surgery they found out they were wrong, and that it had, thus forcing chemo (and a whole lot of fear). So, from my perspective, I look at this as a "leave no stone unturned" kind of way. Everything about this has been more aggressive than we thought, and I have a right to my fears. I realize I cannot live that way, and I don't believe I am most days, but long story short....we need to make a decision about this ASAP. If the door has already closed, then I suppose it was not meant to be, but I want to make a proactive decision, and not let time pass us by and miss an opportunity for lack of effort.
I believe that brings us about up to date! I will add some photos when I have a little more time. I cannot believe how curly my hair has come back. This is normal for after chemo and usually lasts a couple of years. For anyone who has seen me lately, I am well aware that if I were planning to maintain this hair "style" that I am in desperate need of a shape up. However, I don't like the thought of cutting it while I am trying to grow it out. We'll see if I can keep it under some level of control, but with these crazy curls it is getting big and bushy and this Atlanta humidity is not my friend. I just want everyone to know that I am WELL AWARE that we have entered an "awkward phase" and I am debating what to do with it. It no longer passes for what I called a pixie. Anyway....compared to all of this other stuff.....this is not a big deal. No, I don't want to walk around looking like a goober, but if I wash it, put some anti-frizz product in it and let it dry on its own, it seems to sort of stay down so I am going to stay with that as long as I can. :)
So....count down the days with me until this final infusion on September 28th! Thanks for reading!!
