Monthly Archives: September 2013

In the low times, all I have to do is remember

My journey

These days, I'm filled with gratitude for so many members of my support team. No. 1 among them is Belynda Adams, shown at right after paintball outing in April. Her brother, Kyle, and his daughter shared in the fun that day.

These days, I’m filled with gratitude for so many members of my support team. No. 1 among them is Belynda Adams, shown at right after a paintball outing in April. Her brother, Kyle, and his daughter, Madison, shared in the fun that day.

Not a lot to report on this Thursday, the day after my ninth treatment, except that I am still having some of the same side effects that we have already covered. My issue with
blisters on my lips remains, as does the rash. However, the rash is tons better.

I would like to use this update to share my overwhelming gratitude toward those who have supported me in so many ways. Especially, I give gratitude to Belynda Adams. As I mentioned in my last entry here, she is my caregiver. Belynda worked some years ago at St. Jude’s administering chemo therapy to children. It was a special time in her life because each child and his or her parents brought many blessings to her life. She would be the first to say that at times, it was a tough job.

So here we are many years later and I thank God that she is part of my health care team. As you know from previous posts here, the first month after getting the news was so
stressful and alarming. Belynda attended every doctor meeting. You can only imagine the number of questions we asked. I recently received my medical records from my oncologist
(it is still weird to say that I have one of these), Dr. Andres Forero. In his notes he said, “After spending over 60 minutes and answering over 100 questions ….”

At first, I was angry about the comment but later realized that my health care is sufficiently important that, if I asked 200 questions, that was just fine. Still, I have to note that I am very pleased with Dr. Forero. He is so kind and is an incredible doctor.

Belynda’s help at that meeting – and all of them since – was beyond value. She is a blessing. I would not have known most of the technical questions to ask. She is also my transportation to and from therapy. She takes me to each infusion, on Wednesdays at 2 p.m. We usually get done there around 5:30 or 6. She cooks dinner on chemo night and it has become our habit to usually make that meal breakfast. I have a big appetite and it has not diminished through my treatment.

Other key members of my core support team: My sister, Deb; nephew, John Paul; and Sue Rubiee.

Other key members of my core support team: My sister, Deb; nephew, John Paul; and Sue Rubiee.

It is difficult to put into words the selfless support Belynda has shown throughout this process. My sister Deb is also in the medical field and has brought additional smarts and strength to helping me tackle this challenge.

Yes, I am surely blessed to have the people I have cited here in my corner. But I must also acknowledge those of you kindly following along here. Each comment, each prayer, thought, is so loving and kind. It has been incredible.

In the low times, all I need to do is remember. Thank you.

I’ve come to accept that my Thursdays are strange

My journey

Events of this summer have made me introspective. This collage of photos captures just a few of the meaningful people and events in my life.

This week I completed my eighth session of chemotherapy. This collage of photos captures just a few of the meaningful people and events in my life.

So last time I posted I had completed my 6th treatment and now I have just completed my 8th.

This is the day after, which is Thursday, Sept. 19. I am writing this in the morning because by the afternoon, my head feels strange. By this I mean I am only good at focusing
on things for short periods of time. So, I hit my work calendar through the morning hours and then try to sleep but due to steroids that is impossible.

I have come to accept that Thursdays are my weird day. Fridays are much better. I usually go for a short jog and go into the office. Saturday mornings, I meet my running group
for what used to be a 6-mile run. If you read last week’s post, you saw that has been reduced to 4 miles. We will see what this Saturday holds. I can tell that my jogging pace
has slowed a bit.

My hemoglobin is still a little low, therefore my oxygen level is not what it has been. (I believe I have this right.) So, I will run as far as my body will allow and feel
blessed that I am able to participate!

As far as other things I’ve noticed that are different, take last week as an example. Over the weekend I was with old friends on Lake Martin and enjoyed sunset boat rides and
incredible wine and soft music. For those who might not be aware, I love wine and especially good wine. I know some of you may be wondering about how the chemotherapy has
affected taste and whether I can still enjoy a glass of wine. More on that later.

Well, I started with a large glass and continued to accept a few “top offs.” Lesson for the evening: I do not think the chemo likes wine much! Imagine that! There were no real
negative impacts other than just not feeling well during the night. So going forward, note to self: Stop at one glass.

Another difference I noticed is an acne-like rash on my face. Yes, this is another interesting addition. I have little spots above my lip and on my checks and nose. Makeup
helps, so a shout out to my friend Estee Lauder. At some point, I will share with you the process of caring for your skin and face while managing through cancer treatment.

So the overall impact of my journey to date has simply been a little slowing down of my routine. That means I have begun to rest more and stopped exercising as much. During
the week as I mentioned before, I work on Fridays some, then Mondays are better, Tuesday is a lot better and I can still manage a good half day on Wednesday since my infusion
takes place on Wednesday afternoon.

A photo from a biking vacation last year.

A photo from a biking vacation last year.

I am not complaining. Thankfully, I am still able to work out with my awesome trainer Susan Finley twice a week. Running — such as it is — is still doable two times a week.

As those of you who know me best will understand, continuing with a regimen somewhat close to normal means a great deal to me. So I feel very blessed. I have another coach in
this journey in the person of Belynda Adams, who is really my awesome caregiver. We joke abut being in training. She is right, I am training for the upcoming stages of my
treatment: a new stage of chemotherapy and then finally the surgery (see last week’s post).

More on Belynda later, as there is not enough time in my morning today to expand on the blessings she has brought to my life. I will have to devote a post to telling that story.

OK, so back to the wine. So far, I can still taste food fairly well. Coffee tastes a little different. When it comes to wine and certain foods, some flavors seem to have been
altered somewhat. I still enjoy them all but I can tell slight differences. Once again, not bad! As for appetite, it has not changed at all.

Enough for now. Please continue your prayers for recovery and strength. Your support and our Heavenly Father are the reasons I am doing so well.

—- By the way, if you want to receive new posts via email, on the right side of the footer area at the bottom of the page, there is a spot where you can subscribe.

The summer of 2013 was a ‘soul changer’ for me

My journey,
Events of this summer have made me introspective. This collage of photos captures just a few of the meaningful people and events in my life.

Events of this summer have made me introspective. This collage of photos captures just a few of the meaningful people and events in my life.

SailboatWe’ve all heard the term “game changer” applied to a highly influential event – be it a switch in a company’s top leadership or a standout performance by a particular player in
an athletic contest. So those who know me well won’t be too surprised to see that I’ve played off that term in naming this blog. I chose “soulchanger.com” because that is what the
summer of 2013 became for me. More about that in a bit.

If you’re reading this, you likely already know that on June 13, I received some big time news: A diagnosis of breast cancer. Wow!

I had been concerned I might get this news one day for some reason. I have a history of fibrocystic breast disease and was pretty good with self-checks. At times I have had
ultrasounds to check spots. I always held my breath as I waited to learn the results of tests that until now, have shown only cysts.

Still, on the day I received my news, I was in shock that this was really happening. After telling my family, I began my journey to treatment. I had a biopsy and met with
surgeons and an oncologist. This was the most stressful time so far during this process. There are so many types of breast cancer and identification is essential in
determining treatment.

So my close supporters and I got busy understanding this business of breast cancer. Was it estrogen positive or maybe progesterone positive? Maybe HER2, or even triple
negative or any combination. Yikes! What does all of this mean?

It took more than two weeks of lab work and analysis to pinpoint my diagnosis: HER2-positive, further classified as Invasive Ductal Carcinoma. Yes, as you might interpret,
that latter phrase means it had spread to surrounding tissue.

The first group of docs who analyzed my case wanted to schedule a surgery two to three weeks out from our meeting. The thought of further delays were stressful, but they all
reassured us that the cancer does not grow that quickly.

We decided to get a second opinion, due largely to the insistence of friend Roberta Shapiro. She urged us to consider going to the University of Alabama at Birmingham for a
second opinion. I really was not thinking very well and my perspective at the time was to just wish for someone to get this “thing” out of me. Many thanks to Roberta for her
good counsel. She is director of special projects for the UAB Health System and was able to get me in quickly to meet with those who would become my team of docs.

After our fist visit, we knew that we were in the right place. Instead of surgery and then chemotherapy, our UAB team takes a different approach. They start with chemo
and then surgery. This allows them to evaluate the effectiveness the chemo is having on the areas affected.

For example, after my first three weeks of treatment, they knew that my cancer had been reduced by 60 percent.

Presently, I have had six weekly treatments of a chemo called Taxol. I also receive a drug called Herceptin. The Herceptin in due to the fact that I am HER2-positive. This
drug I will take for one year. Its job is to knock down a certain cell protein that gets out of hand and that’s what led to development of the cancer in the first place! It is
a fairly new drug and has improved the outlook and chemo regimen for HER2-positive patients.

I have six additional weekly remaining and then I will be administered Adriamycin and Cytoxan every two weeks for four treatments. I am not looking forward to this last series
of four. One of the drugs is called the “red devil” and I am choosing to call it the “red warrior.” Following the last four treatments, they will give me three weeks to rest
and recover, and then I will have a mastectomy.

This blog will help facilitate my sharing information about this journey. I’m blessed to have many people supporting me with text messages, calls and emails — which are all
just GREAT! I just thought this might be easier on everyone to have a source for the latest information about my progress. Also, it is my hope that this could be helpful to
others.

Back to how I chose the title of this blog. I remember shortly after learning my diagnosis, reading in one of my reports the term “metastatic disease.”

Seeing that term on paper and knowing it applied to me and my condition was indeed a soul-changing moment. I have enjoyed an active and busy life (and plan to continue to do so
– my work routine is only slightly impacted so far and I jogged four miles Saturday morning). These nearly 90 days have caused me to make more time for quiet introspection. And to find a richer level of joy – and peace – in routine things we sometimes take for granted. For instance, simply preparing a meal at home.

I will try to post regular updates here. Thank you for following along.