I had a bilateral mastectomy with reconstruction on Thursday, July 17. Now, three weeks later, I'm finally feeling well enough to update my blog with the latest!
My surgery was scheduled for the day after Jack's 7th birthday. While it was kind of crazy timing, his birthday was a nice distraction from my upcoming surgery. We had a baseball birthday party with his friends the Saturday before his birthday. The evening of his birthday, I prepared his annual birthday dinner (noodles with red sauce!), and we had cake and ice cream. It was a completely normal birthday!
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| Happy Birthday, Jack! |
The next morning, I had to be at the hospital at 5:30 for an 8:00 surgery. Both Jack and Lucy wanted to see me before I left for the hospital. So, I quietly went into each of their rooms before I left. They woke up and gave me sweet kisses and hugs. Such a sweet send-off!
Once I was at the hospital, things went pretty quickly. I got checked in and into a bed then was wheeled down to nuclear medicine to be injected with a radioactive material that would allow the surgeon to locate the sentinel nodes during surgery. I then got to see each of my surgeons (the surgeon who would do the mastectomy and the plastic surgeon who would do reconstruction) and then blissfully drifted off thanks to the anesthesia!
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| Ready for surgery! |
The surgery lasted about four hours. The surgeon removed each breast and then the sentinel nodes on each side. The sentinel nodes are identified with the radioactive material that was injected before surgery. Those are the lymph nodes that the breast drains to first. The idea is that if those nodes are clear, all the other ones should be too. A biopsy is done immediately on the sentinel nodes. If they are negative, no further lymph nodes are removed. If they are positive, a lymph node dissection is done to remove more lymph nodes. In my case, the sentinel lymph nodes on both sides were negative! This is great news because I did have a positive lymph node on the right side before starting chemo in January. However, the chemo was effective in completely wiping out the cancer there! After the surgeon was finished with the mastectomy, the plastic surgeon moved in to begin reconstruction. His plan was to place tissue expanders behind my pectoral muscle. These will gradually be filled, allowing my skin to stretch gradually before replacing them with permanent implants in several months. He did place the expanders, although he had to use significantly more collagen than expected in order to keep them in. Turns out, my pectoral muscle is not quite as square as normal, so there are a lot of additional stitches to hold in the collagen. Eight drains were placed to allow fluids to drain after the surgery.
I stayed in the hospital for two nights. I don't remember a whole lot about my stay. Between the anesthesia and pain meds, I was pretty out of it! My kids came and visited me once each of the days I was there but otherwise were having fun at home with grandma. I was discharged from the hospital on Saturday. Turns out that was the same day as swim championships for Jack. He is on our neighborhood swim team and had had a great season. He was so happy to have qualified to swim in championships in three different events, and we were so proud of him! We knew it would conflict with my hospital stay, but we agreed to make it work if he qualified. So, on Saturday, Quentin's duty was to get Jack to championships. My mom was at the hospital with me when they discharged me and then drove me home. I was home and settled in time for Jack's first event. I was so fortunate to watch him swim all of his events via face time. Quentin followed him down the pool with his phone, and I was home watching on the iPad, cheering the whole time! By the way, he swam great and had personal-best times in all the events he swam in!
I was so glad to be home, but it was a long time before I could do much of anything. I was under strict orders to not raise my arms for the first week. My rule was that my elbows had to stay by hips. The drains also seriously inhibited my movement and made me extremely uncomfortable. I was forced to sleep on my back for about two weeks. This was not easy for me, since I almost always sleep on my side. When I was awake, I was mostly in a recliner with strategically placed pillows around me in an attempt to make me more comfortable. Unfortunately, comfortable was an almost impossible feat! Just a couple of days after my surgery, my back began to hurt so badly from not being able to move. It was by far one of the most painful parts of the experience.
Another one of the worst things about this experience was the drains. I had eight of them coming from various parts of my chest, draining into four bulbs. Lucy took one look at me and immediately proclaimed that I looked like a jellyfish! The drains had to be cared for and emptied three times a day. Of course, I wasn't able to do this myself. Quentin or my mom helped with this task every day. Quentin would usually do it in the morning and at night. My mom was staying with me during the day, so we'd usually do the drains in the afternoon after Lucy went down for her nap. I couldn't do much of anything for myself for about two weeks. Not being able to raise my arms above my head made it impossible to do most of what my kids would need from me, as well as care for a lot of my own basic needs. I am forever grateful to Quentin not only for taking on extra household chores but also for caring for me in ways I never imagined I would need! My mom also did a wonderful job helping out and taking care of all of us. She came over every morning before Quentin left for work and stayed until he got home in the evening. She took care of me, the kids, and also pitched in with housework and laundry. On the two days she couldn't be with us, my mother-in-law was kind enough to pitch in as well.
My drains came out about 1 1/2 weeks after my surgery. This is apparently slightly sooner than is typical, and thank goodness for that! I have never been so glad to be rid of something in my life! Once they were gone and I was able to move more, my back began to feel better. I was also given permission by the surgeon to slowly begin to raise my arms. I had to go very slowly, however, starting with my fingertips at the top of my head. From there, I could raise my arms an additional 1/2 inch a day. I could do this exercise once a day, using marks that Quentin put on the wall for me. Obviously, even with this progress, there was still a lot I was unable to do for myself. I continued to need someone to care for me and the kids around the clock.
Just as they had been on days when I was feeling bad during chemo, my kids were so sweet to me. We watched movies and played lots of card games and board games. As I began to feel a little better, I would sit outside in the shade with them while they played. There were days where we were all feeling a little bit of cabin fever! We're usually a family on the go, so the kids are definitely not used to so much time at home!
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| My sweet babies entertaining me! |
At this point, three weeks out from surgery, I'm feeling much better. I can reach my arms pretty far above my head. I'm able to pretty much care for all of my needs now and am able to care for almost all of the kids' needs. I still haven't been home alone with both of them for any extended time, but I think that will be possible soon! I've even been given permission to drive! I've also had two "fill-ups" in the expanders. I'll be going about every five days to get these injections. So far, this part hasn't been too bad, but I've been warned that it becomes more uncomfortable with more injections.
As for next steps, we knew that would largely depend on the pathology report following the surgery. Like I mentioned earlier, all the lymph nodes they removed were negative. Also, the left breast showed no signs of any cancer! There was a small (5 mm) tumor remaining in the right breast. Although we were hoping this one would be clear as well, the chemo definitely did a lot, shrinking it from an original size of 3.5 cm. Overall, my doctors are very pleased with these results, even though we did not get the complete response we were hoping for. There were clean margins, so they're confident they got everything that was remaining. I just saw my oncologist again the other day to discuss next steps. It's possible I may have to have another surgery soon to remove another lymph node. Although it's hard to believe, they aren't certain whether they removed the lymph node that I had biopsied back in January. That one is important because it was positive. They did remove two lymph nodes on that side, the sentinel nodes based on the test done during surgery. There was a clip in the lymph node that was biopsied in January. At this time, it's unclear whether there was a clip in either of the nodes removed. So, I'm having a CT this weekend to see if there is still a clip inside my body. If so, there will be an attempt to remove it and the correct lymph node. If not, they will assume they removed it during surgery. Regardless of those results, it looks like I'll be having radiation. I'm scheduled to see the radiation oncologist next week. They'll be radiating the internal mammary lymph nodes (which are in the middle and are unable to removed). There was a node there that looked positive on an early MRI, although there is no way to biopsy or remove it. My most recent MRI shows no signs of cancer there. However, my doctors are on the same page with me in that we need to be as aggressive as possible to make sure we have everything. So, that means radiation will likely begin pretty soon! As far as any other treatment, my oncologist has checked into a couple of clinical trials. There is one currently under way at Indiana University, but it turns out I don't qualify for it because of the size of the tumor that was remaining after chemo (it was too small!). There is another one that she thinks I will qualify for, but it is not open yet. She thinks it will be open around the time I finish radiation, so we'll explore that option a little further then.
For now, I'm loving that I feel a little bit better every day! I'm also learning to embrace my new short hairstyle. It took some time to adjust to it, but at this point I'm just glad to have hair! I'm happy to say that I haven't had on a wig or scarf on since we went on vacation, which was about a month ago! The short hair has also been a blessing the last few weeks since I wouldn't have been able to care for long hair. The way it is now, I towel it dry, put in a little gel, and I'm ready to go!
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| Here I am three weeks post-surgery! |
As always, I am so thankful to be surrounded by such wonderful family and friends. We've had so many meals delivered to us over the last few weeks. It has been such an awesome thing to have that taken care of! I've also received so many calls, texts, messages, cards, flowers, fruit baskets, etc, etc!!!! As I've always said, each and every one of these things helps me to feel stronger and to know that I'm not alone. I am truly blessed!
