Random brain thingies.

We had a really good weekend here at the Harley household. Mike worked off and on, since the SharePoint upgrade is just a week old, there are still lots of things to clean up. We took a little trip to REI so he could get some much needed cooler/cold-weather gear for his bike rides/commute. Then we stopped at Sweet CeCe’s for a treat before heading home. Tyler also had to work his new job at the mall (Old Navy) which he is enjoying a lot. That job practically landed in his lap. The boy is so lucky when it comes to jobs! Mike wanted to go for a bike ride around town, so he did. 24 miles round trip. It’ll be nice when we move closer to the parts we like to hang around in town so that trip isn’t so daunting. I’d go with him, but just from here to Percy Warner Park wears me out, let alone going down to 12 South, etc. Since I’m on chemo, my energy level is super low… even when I do feel up to a bike ride, I run out of gas quickly. Mike is so patient to let me rest whenever I need to. It’s super encouraging.  I’m really looking forward to biking with him more when I’m done with chemo & get my energy back. The bike rides we took before were really fun, even when we were just doing the B-Cycle rentals.

Saturday evening, we took the boys with us to see a movie. Damn. That won’t be happening a lot.. after tickets and snacks, we spent close to $80. But it was nice to get out of the house. We saw Ender’s Game. Mike owns the book & read it awhile back. Tyler started to read it but didn’t get far, but he was wanting to see the movie regardless. Hunter had to read it as part of his freshman seminar class, and I’d seen the previews so we were all looking forward to watching it. I figured with Hunter having just finished the book that day, he’d have high expectations of the movie, which he did. I sat next to him and the ENTIRE time he was critiquing it. Poor kid.. ha! Not that it wasn’t a good sci-fi flick. It was. Lesson learned about the differences in movies vs. books

I’ve been struggling in my brain lately with the fact that I can’t do what I want right now. Here we are, Living in a new town and I want to jump in, explore & become part of the community, but I’m supposed to rest, heal, taking care of myself, and on top of all that, not work. I know it’s only for a season, but it still bums me out at times. On one hand, the break from that busy schedule is really good for me. On the other, it makes me feel so useless. I feel like such a shell of my former self lately. I’m happy to be here in Nashville, don’t get me wrong. I just feel… disconnected. Out of the loop. Lame.  I want to do all the things…. I want to be working again &  build up a clientele here in Nashville. I want to attend community events & feel a part of this wonderful vibrant city we love so much. It just has to be put on pause right now. I need to be okay with this and just chill out. *sigh*

I am keeping myself and my brain as busy as I can though. I’ve been reading a lot lately and it’s good for me. I always go through spurts of reading/non reading. For the majority of this year I’ve been a non reader, but now with all this downtime, I am filling more of my days with it. In the last 2 months, I’ve read 2 books about thru-hiking long trails, and 2 memoirs about battling cancer. Before that was another fiction book, but it was one that forced you to think on what’s being said, so it was slow going.  I’m ready to move back into the less-thought-required fiction realm and read something I call “brain candy”.

Speaking of candy, I’ve been dabbling a little with the well known addictive game Candy Crush, and it hasn’t driven me mad, but I’m resigned to the fact that I won’t get to levels 100 and up. Heck, I can’t get past #29. That game is so rigged, and I refuse to pay for extra lives or special powers. It also gives me a hankerin’ for some hard candy. #Random

I finally made an appointment for Mike to get into a dentist. Let’s hope we like this one. I hate shopping for new dentists!

There you have it: a blog post where I don’t just talk about cancer treatment. It’s become a huge part of my life as of late, so I can’t help it. I look forward to days where I talk more about things we’re a part of. OH! Speaking of which, I really really want to be a part of Help Portrait again this year, the Nashville edition. Being a part of the inaugural Crossville event was really enjoyable, especially being a part of the leadership team and in charge of the hair and makeup crew. If I volunteer this year, it’d be something simple like greeting/check-in or the like.  I’m debating on whether I should even do that much though… working with the general public and all the germs while on chemo. Eh. This is where being a cancer patient and being a social-want-to-help-people-person sucks.

4 down, 2 to go.

Had round 4 of chemo yesterday.. 4 down, just 2 more to go! 6 short weeks and I’ll be done with this portion of my journey.

Mike had that SharePoint 2013 Upgrade over the weekend at work, and a health assessment as well as his flu shot appointment at work yesterday morning, so he biked in to work as usual, but then biked over to 100 Oaks in time for my oncologist appointment and then for my infusion. It worked out perfectly, because I had to wait (as is expected by now) to see Dr. Mayer, so he wasn’t late for anything and got to miss out on all the waiting.

The visit with Dr. Mayer went well, she was happy to see my blood results looking good. My white blood count wasn’t even below normal range, which was nice. I know I felt better this round than I had the last 2 rounds. My taste buds weren’t even doing the funky thing they normally do. I considered that a gift!

I finally got into infusion at about 1:00 (only 2 hours later than the time I was supposed to but only waited at infusion to be called back for 20-30 minutes as opposed to 2 1/2 hours last time.) Anyway, once I got back and got my pre-meds going, chemo finally started around 1:30. We were done with my chemo in 2 hours, then another 30 minutes for the Herceptin. We were both so sleepy that we fell asleep during my last infusion. I only woke up because I had to use the bathroom, and woke Mike up in the process because we had fallen asleep holding hands (awww) I am so very thankful for this man I married. I see women coming in for treatment alone and it makes me sad. He always wants to be there with me for treatment especially, and I tell him “thank you for being here with me” every time we go. His response is always, “Of course, baby!” Words just can’t express my gratitude for him. Although I do try daily to show it to him 🙂

We finally got home a bit after 5pm and had dinner. Mike and I were both so tired that after dinner we just zoned out with TV and kindle.

I started reading a book the night before last. It’s called “Breast Left Unsaid” and written by Jude Callirgos (@judecallirgos on Twitter) We met on Twitter after I did a search for “Breast Cancer” which I do now and then, and followed. She followed back and we have chatted a few times on there. Her book is only 2.99 for Kindle edition so I quickly grabbed it. She was first diagnosed 6 years ago with stage 2B DCIS but it had also started to invade her breast a tiny bit and also her lymph nodes. I’m not yet done with the book, so I don’t know how she is now stage 4 but she is. Reading her book and all the pain she’s been through, the multitude of tests and painful procedures, the emotions (which I can so strongly relate to) has brought tears to my eyes many times, but it also has validated me so much in my decision to just be rid of my natural born breasts from the onset. The what ifs of doing a lumpectomy (especially with my family history) scared me. There is still no guarantee regarding recurrence chances, but I believe my docs and I have the best plan in place for heading this nasty disease off at the pass.

Anyhoo.. day 1 of Round 4 has been tiresome thus far. I woke up feeling DRAINED. Like total crap. Mike got me some more water, I took my meds and went back to sleep. The boys got off to school just fine without me having to leave the bed, which was a bonus. I got up around 10:45 and had some toast, but it’s not sustaining me.  I’m going to scrounge for some lunch now.

The hunt for a wig

I went to the wig shop the other day and tried some on. The person helping me wasn’t the normal wig expert.. it was the hairstylist that worked there. I loved her and appreciated her helping me as much as she could, and fell in love with one of the wigs, but haven’t heard from the person that runs the shop yet. I left my name and # with them too. I’m impatient and now that I have the funds to buy one, I’m frustrated. They’re closed today. So I’m researching another store. It’s frustrating that my insurance won’t pay anything toward a wig. The first place I went to was one of those hair restoration places and everything there is human hair and very expensive. Of course I won’t pay full price for one of those. Even with the cancer patient discount it was going to be $900. No way. I called another place and they actually answered the phone, are closer, and have a discount. So, off to another wig shop for me today.

I went to visit Mike again for lunch today, and was telling him how I thought obtaining a wig would be a quicker/easier process. Here I am about to have my third treatment and I don’t have a wig. I should have shopped a lot sooner, and wish I had known about my insurance not paying anything. I wouldn’t have bothered with the first place and maybe would have gone straight to the local wig shop that I’m going to visit this afternoon. More lessons learned.

I’m also cruising for a new dentist for us. We’re getting due for our cleanings. Mike & the boys already have appointments with new primary care physicians, so I’m glad we have those things established. I still need to find us a new eye doctor too. Moving and getting new healthcare providers as well as going through this cancer stuff is a lot.

I go in the morning for my labs, then see my oncologist, then get chemo, THEN see Dr. Braun again. Full day for sure, but at least the process isn’t starting at 1pm. Tomorrow I’ll be able to say I’m halfway done with chemo. w00t!

 

I love my surgeon

I went to see Dr. Braun today, and I thought I was getting my last fill up. After discussing it with him and having another 100ccs added to my expanders (now up to 670cc) his advice is to err on the side of bigger if I’m on the fence about when to stop.

Also because of how I’m shaped and how I was before surgery (which I was happy with by the way), he says I can still go bigger and it wouldn’t be too big, would be aesthetically pleasing/shaped and all that.

The tissue expanders are hard, and the implants are not. So it’s really tough to know what it’ll look like after all is said and done, but I trust his professional judgment. He said rarely has he had anyone say, “I wish I would have gone smaller.” It’s usually the opposite.

I figure with what I’ve been & still have to go through, this is one of the few perks (haha) and I get to have a say in this. I also asked about surgery, and he said surgery during Herceptin shouldn’t be an issue. I will ask my oncologist about this next week also. Since Herceptin is bio therapy, my immune system should be in good shape and not put me at the same risk for infection as when I’m on chemo.

Wow! Two updates in one day. I’m on a roll!

PS one of these days I am going to put a slide show together of my appearance evolution. Should be interesting 🙂

Blog Schmog

Already I’m slacking off on what I had planned to be a regularly updated blog. No, I’m not giving up on it. Also, I don’t want to just blog about blogging and things I intend to do then never get around to actually doing them. How lame is that?

Today I have an appointment with the plastic surgeon. I’ve been debating for 2 weeks now whether I should get one more saline fill in my tissue expanders, or stop. I think I’ve decided to go for one more. They may overshoot where I want to be a little bit, then will let the expanders and my skin rest for 3 months before surgery to swap out for permanent implants. I’m hoping I can still have surgery done while getting herceptin treatments. I’m not positive if that can happen though. Not sure what the risks would be. If I can’t get that surgery while on Herceptin, I’ll have to wait until next August or September to have that surgery! That seems so far away. 🙁 I’ll have the port in until then too though, so they may want to save the port removal and implant swap for one combined surgery.

I need to figure out a to do list for each day, hopefully involving some activity that gets me out of the house. I have better mental health when I go out of the house. Being cooped up is no good for me at all. I have to make a trip to the grocery store today. I might just make a Target trip instead because there are a couple things I need to get for the boys, and Kroger may not have them.

Update since I walked away to get ready for my outing:  I probably can skip Target and do a CVS run instead, because I found one major item on my list that I thought was missing. Yay and TTFN!

My Breast Cancer Diagnosis

Since I have a family history of Breast Cancer, My mom had always told me not to take birth control pills, and to make sure I start getting mammograms at age 30. I listened to her.. avoided the pill, and got my first mammogram at 30. I didn’t go back for another one until I was 35. I’m 37 now and had forgotten last year. April 24, I went in for a mammogram. The next day, they called me and said the doc wanted to see me for another mammogram, this time with an ultrasound as well. That call startled me a bit and I got teary, but soon recovered. It was probably just tissue changes due to my monthly cycle due to start in a couple days. I went back for my 2nd mammogram + ultrasound on May 10th. They informed me it was my left breast they were focusing on. The radiologist saw calcifications that he said could be related to cancer, but not always. Recommended that I get a biopsy done to be sure, considering my family history. I wasn’t too concerned, just anxious about the procedure. My doctor was on vacation, so I had to wait for her to return in order to see the films and to refer me. Since we were planning to move to Nashville this summer anyway, and I had already established a patient record at Vanderbilt for my thyroid screenings, I asked to be sent to the Vanderbilt Breast Center. My biopsy was scheduled for May 31st, and Mike and I were impressed with the level of care at the Breast Center as we were before when I saw Dr. May for my thyroid. The procedure was painless from start to finish. I was excited that the Breast Center had a robe for me to wear instead of the usual hospital gown. Fancy! The process was as painless as biopsies can possibly be. I had been anxious for nothing and soon I was on my way home.

I got the call at work on Tuesday, June 4th, 2013. I was working on a new color client who was understanding when I took the call… the nurse was calling to ask how my biopsy site was healing up. “Great!” I said.. then she asked if it was a good time to talk about my results. “Is it good news or bad?”, I asked. “It’s complicated”, she said. I told her I’d have to call her back, after I was finished with work. Cue the nerves.. and trying to convince myself that “complicated” didn’t mean cancer, just something different than “all clear”. I finished my customers for the day and called her back.. She was so sweet when breaking the news to me. “I’m sorry, Mrs. Harley, it is bad news. It’s cancer.” Words I will never forget for the rest of my life.

The cancer I have is ER+, PR+ and HER-2+. I have opted to have a double mastectomy and reconstruction. I will need chemo, and will be treated with Herceptin to attack the HER-2. I will also be taking Tamoxifen for 10 years.