I apologize for taking so long to post, but Thanksgiving Eve seems an appropriate time to say that my CT scan last week showed great progress!

The plan moving forward is to continue this treatment once every three weeks and have another CT scan after three more treatments. If all goes well, this treatment will continue as a maintenance treatment and the doctor visits and scans will become less frequent.

As hoped, there are fewer side effects from this treatment. They also don’t last as long between treatments, but the few I do have are a little more intense during that time. This has taken a little getting used to, but it’s not too bad and I’m getting better at predicting how I will feel. The good thing is that once the side effects do wear off I feel great. An added bonus is that my hair is back. It’s short and it’s gray, but it’s here and I’m learning to like it.

As I mentioned in my last post, I was looking forward to feeling and looking more normal. That has definitely been nice, but it will be nicer to feel, look AND live more normally now. For months I’ve felt like my life has been on pause. I’ve hesitated to make a lot of plans, start any long-term projects or indulge in the distant future list-making I like to do when I’m avoiding things I don’t want to deal with (talk about adding insult to injury!). I know that there’s still more to go through and nothing is guaranteed, but I’m going to try to make all of this a little less consuming part of who I am and what I have to think about every day. My hamster friend will still be hanging around, but I think I can get him down to a manageable trot / power walk.

So until next time, I hope everyone has a great Thanksgiving. I know mine certainly will be and a lot of that reason is because of all of you. Thank you for everything you all have done to make me feel loved and supported. One of my biggest fears in going through this is that I would be alone, but it turns out nothing could have been further from the truth.

Peace, love and turkey!
Gert

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I had a CT and bone scan on 9/15 and unfortunately it seems the tumors/legions have stopped responding to the treatments. The plan now is to stop the current combination of chemo drugs and start me on a newer drug called Kadcyla.I will receive this treatment once every three weeks for three cycles and then will have another round of scans the week before Thanksgiving.

Kadcyla is the drug that my doctor initially wanted me to be in a clinical trial for, but I was not eligible for it once we discovered the cancer had spread. Now, however, since I’ve had chemotherapy and need to try a different route, I can receive it without having to be in a trial. Right now I am just waiting for the insurance approval on the change in the treatment plan, which should come tomorrow (Thursday). So I should get my first round this week.

The good news is that this drug only targets cancer cells instead of all of your cells, so there are fewer side effects (my hair will start growing back). And I won’t have to have the steroids and Benadryl anymore, so I won’t have the issues from those either. Also the treatment will be just the one drug and will only take about 30 minutes, so I won’t have to be out for an entire day anymore.

I am definitely disappointed and frustrated at the moment. I had done so well and had such a good response on the first scan that it’s been hard to accept this change in plans. I am hopeful that this new treatment will be successful, and for now I am trying to concentrate on the other positive aspects. And while I may feel less-than-great mentally for a while, at least I should start to physically look and feel more like myself again very soon.

Things continue to go well, which means I’ve continued to work every day that I don’t have treatment. And it means I’ve felt well enough, and my white blood cell count has been high enough, to go out and about running errands and being social. As much as my introverted weirdness allows anyway. So, as I mentioned in my previous update, it hasn’t left a lot of time or energy for creative writing. When all of this started I think I pictured myself spending days at a time, wrapped in a quilt on my couch, crafting witty and insightful blog posts about my trials and tribulations of treatment and what it’s like to have cancer. Turns out that when I am wrapped up on a quilt on my couch, it’s because I’m physically and/or mentally tired and the only thing I have the capacity to handle is watching British people solve crimes on Netflix. Plus, if anyone is on my couch and looks comfortable, it’s apparently a universal canine signal that you want one to come and lie on you.

But enough about my lack of writing… Here is where things stand:

I am moving forward with the two extra rounds of treatment. So, as of yesterday I have six more weeks of chemo. It’s like I’m the groundhog of breast cancer. (See… there I go with the rodent talk again…).

I will have another round of scans prior to the seventh round of treatment so we can see how things have progressed. At that time I am hoping I can get a better idea about whether or not I will have surgery and/or radiation. But that decision may not come until after treatment is completely over. And really, I am fine with whatever the decision is, I think I’m mostly just anxious about how to plan out my calendar for after treatment and how many more to-do lists and appointments I can write down and check off. If nothing else, having a chronic disease has really allowed me to hone my project management skills.

As far as side effects go, they continue to remain mild: fatigue and I’ve developed slight neuropathy in my feet. I’m going to acupuncture a couple of times a week though and that seems to be helping to keep it from getting any worse. The neuropathy would be one of the main factors in cutting back treatment or not completing the last two treatments, since if it were to get very bad it could be irreversible. So I am paying close attention and doing what I can to keep that from happening. In general the side effects are definitely cumulative. While I didn’t feel so badly that I wasn’t able to function after the last long treatment, it certainly took me longer before I felt “normal” again.

The good news is that I’m getting out of town next weekend. Woo! I’m not going too far, but it absolutely falls under the category of travel – my original plan for this site – so maybe that will inspire me to write about more than treatment schedules and work-related communications.

Until then… I hope you all have a lovely and restful Labor Day weekend!

I’ve been neglectful about updating. The good news though is that I have felt so well throughout the chemotherapy treatments so far that I’ve been able to work more than I thought I would. So, most of my mental energy has been used for work. Which is a positive thing, I think.

The other good news is that I had a CT scan this week which showed that the tumor and other affected areas have responded to the treatment and reduced by 40 – 60%. As I am halfway through the initial six chemotherapy treatments, I think it’s safe to say that things are on track! Based on what my doctor told me at the start of treatment, as well as her follow-up exams during the process, I was very optimistic that I would have good results, but it was still nice to have that confirmed! After receiving the good news I asked about a couple of other things:

  • Additional rounds of chemo? My doctor’s original plan was for six rounds of treatment with the possibility of adding two more rounds, depending on how things went. I assumed this meant that if everything responded well I would only do the six rounds. Not so. If everything continues to respond well, and if I continue to handle the chemo well, then she will add the two other rounds just to be on the safe side. I will have another CT scan after the six treatments (early September) and she will decide then.
  • Surgery? Whether I will have surgery or not is still undecided. My doctor will again wait to see how things respond to treatment before she decides what to recommend. From what I understand, the reasons not to do surgery are 1) because the cancer had already spread outside the breast and lymph nodes, and 2) because the cancer is triple positive, there are multiple therapies available once chemo and radiation treatments are over that should help to keep it from recurring. So, I will wait and see, but think I will be fine about it either way.

Otherwise… as I mentioned at the beginning, I have felt better than I expected throughout these first three rounds of chemo. The effects are cumulative, but so far my biggest problems have been fatigue (I’m now a person who naps), skin issues related to the steroids (a.k.a. karma paying me back for not having acne as a teenager), and hair loss. For me the joys of baldness can really be put into three categories:

  • The good. I have a smaller and better-shaped head than I thought I would. And, some of my hair is already growing back. Granted, it’s the tougher gray hair that’s growing back – but hey, I’ll take what I can get!.
  • The bad. I’m odd looking and socially awkward on a good day, so this doesn’t really help. Under normal circumstances, if I’m walking into a situation with a larger group of people, the “flight” part of my fight-or-flight instinct will kick in a bit. So now? Now I’ve had to keep myself from bolting for the lobby doors while waiting in line for the elevators at work, or spend several minutes talking myself into getting out of the car and going into a restaurant to meet friends. It’s gotten a little better with time, but overall I would say its the worst part of this whole situation.
  • The funny. I’m actually a little girly-er now. I’ve never been into makeup much, but with the skin problems from the steroids and the lack of hair, I feel the need to wear makeup every day. So I invested in a really good foundation and learned about the wonders of green concealer and it’s amazing the difference it makes. Plus, applying the green concealer in the mornings makes me feel a little like Elphaba / The Wicked Witch of the West so that’s an added bonus. 🙂

I hope to do a better job of writing over the next few months. If not, please take it as a good sign and please know that I love and appreciate all of the good wishes, thoughts and prayers that everyone has sent my way.

 

 

 

I like it when things come full circle and the universe sort of validates something you’ve been thinking about or answers a question you’ve been having.

I was flipping through my binder of DVDs last night and saw the disc for the movie, Stranger Than Fiction. If you’ve never seen it, I highly recommend it. It’s odd and unique and beautiful and sweet and in my top 10 movies of all time. Will Ferrell plays an overly structured IRS agent who finds his life being narrated by an author, played by Emma Thompson, and crossing paths with a very un-structured baker, played by Maggie Gyllenhaal. You also throw in Queen Latifah and Dustin Hoffman, and I mean really, what is there not to like?

Seeing it reminded me of my favorite lines from the end of the movie, and that reminded me how well their message goes with my previous post where I was trying to be mindful and thankful for the people and objects around me.

As Harold took a bite of Bavarian sugar cookie he finally felt as if everything was going to be okay. Sometimes when we lose ourselves in fear and despair, in routine and constancy, in hopelessness and tragedy, we can thank God for Bavarian sugar cookies. And fortunately when there aren’t any cookies, we can find reassurance in a familiar hand on our skin, or a kind and loving gesture, or a subtle encouragement, or a loving embrace, or an offer of comfort, not to mention hospital gurneys, and nose plugs, and uneaten danish, and soft-spoken secrets, and Fender Stratocasters, and maybe the occasional piece of fiction. And we must remember that all these things – the nuances, the anomalies, the subtleties which we assume only accessorize our days, are in fact here for a much larger and nobler cause. They are here to save our lives.

Then, for some reason, I got it into my head that I wanted to know what Bavarian sugar cookies look like (I couldn’t remember from the movie), and it turns out they suspiciously appear to be like the tasty little iced sugar cookies my German friend, Claudia, makes by the dozens at Christmas. (Please note: this is extremely curious, as I have been told by her NUMEROUS times, that while technically German, “Bavarians are rednecks.” So I am sure there is no way on God’s Green Earth these could be the same cookies! :))

Why is any of this important, you ask?

1. Claudia, in addition to being an awesome friend on a normal day, was diagnosed with breast cancer almost two years ago to the day before my diagnosis and has been my go-to for so many things the last couple of months that I would probably still be crumpled pile in the corner if I didn’t have her to answer my questions and kick my ass when needed.

2. Back when I found out I would be in treatment through the summer, I went about making a list of things I could look forward to in the fall and winter. The list was just something to make me feel like I have some control in this situation and it consisted of the kinds of things mentioned in the movie – things that we assume are mundane but are here for a much nobler cause: like mittens, UT football games, driving around to look at fall leaves, the back-to-school photos my friends post of their kids on Facebook, the tissue paper crowns we drunkenly wear at my mother and step-father’s Christmas Eve party, and so on.

3. One of the other things on that list? Those damn, delicious little cookies.

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Chemotherapy started this week. It was monumentous and uneventful all at the same time. If that makes sense. I also saw a psychologist this week to help with anxiety. She gave me a mindfulness exercise to do that, I have to confess, seemed way too simple and as though it wouldn’t work. I gave it a try, even though I was thinking, “this is totally not going to work.”

But you know what? It totally did.

As I was brushing my teeth the morning of my first treatment, I started to panic, but I did the exercise:

  • plant your feet and feel them connect with the floor
  • press the palms of your hands together (or against your legs if you don’t want to look like you’re praying)
  • look around the room and deliberately notice five different things
  • listen and notice two different sounds

Not only did this work, but there was an added bonus: the items I noticed also reminded me of wonderful people and/or events that I don’t usually take the time to notice on a normal day. Here are two of them:

The blue glass bluebird (pictured above) was given to me by my sweet friend, Lisa. It has been cheerfully catching the morning sun and greeting me from the window ledge in the shower for the last 10+ years. I love colored glass and there’s something about the little bird that just conveys happiness (thus the name, I suppose…). My friend Lisa is like that too. She has one of those personalities and smiles that makes everyone around her happy.

Displaying FullSizeRender.jpgThere’s quite a bit of blue in my bathroom – one of the other bright blue things is a painting of the harbor around Dubrovnik, Croatia. I visited there once while on vacation with my father, step-mother and step-sister. It was an amazing trip and Croatia was one of my favorite stops. And yes, I know we only saw what is probably the most touristy spot in the whole country, but it was still fantastic and beautiful and I still can’t believe I was ever in Croatia. What caught my eye in the painting was that boat there on the left side. I don’t know about you, but I could really go for spending the day floating around in a boat on the Adriatic Sea, and I have imagined doing so several times since that morning.

As I have been down this path of health issues, it has been super easy to be completely self-involved. This exercise was the perfect way not only to combat some anxiety, but also to make me think about something other than myself. Those few seconds of mindfulness prompted much larger thoughts about how much I have to be thankful for, and those thoughts stayed with me throughout that first day of treatment and beyond.

So whether I am doing this exercise again or not, my goal is to do a better job of noticing the good things around me and to be reminded of the people I’m lucky to know and occasionally travel with. Thank you for being those people.

5/13 – Chemotherapy did start yesterday and went very well. I was there ALL DAY – and aside from being infused with all kinds of crazy-assed chemicals through a foreign object that’s been implanted just below my left collar bone and smashing my personal record for the most number of prescription medications I’ve been on at one time (ok, so the previous personal record was one… the bar was set pretty low…) – it was a positive experience. Side effects will be cumulative, so while I will likely not feel well a few weeks from now, I’m good so far.

The results of the liver biopsy are back. There were two samples taken and one of them was positive for cancer, but it did not indicate a “high concentration of disease,” so my doctor said it would be treated with the same plan and she would monitor it. This is what she suspected all along, so while I always wished it would be negative, I wasn’t shocked and just happy that it didn’t throw any more wrenches into the things.

Because the breast cancer has spread to other areas, it will mean that after treatment, in addition to taking a maintenance drug until I am 50ish that blocks estrogen and progesterone, I will now also take another maintenance drug in the form of a shot, once every three weeks for the rest of my life. A minor inconvenience in the grand scheme of things, I suppose.