It’s About Time…Off

It’s almost official. I filed for a leave of absence to take effect the first quarter of this year. My boss was so understanding, as expected. I looked at the calendar and the first week of classes will consist of doctor’s visits, scans, chemo, and more visits every single day of the week. It hurts my brain and makes me anxious to think about juggling it all–work around doctor’s appointments, carry my computer with me everywhere I go, and worry about whether I will stay caught up or get “dinged” for not completing a task.

It’s so liberating to have that off my plate!

We have been contemplating this for a while, and downsized in expectation of the time I would take off. I’ve been fighting the MBC battle for three years now, so I feel like I’ve paid my dues. We finally took the leap. Now I can focus on my health, and staying healthy. We can enjoy life while I am still feeling good, while also helping Tim in combined ministry efforts. We will re-evaluate at the end of the term and decide whether this will be permanent retirement, but it’s likely going to be. Maybe I will have more time to blog and help others who are going through this crazy journey.

Á la prochaine…Until Next Time!

Seven Years Ago Today…

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Seven years ago today, on 12/12/12, my family doctor sat me in her office and uttered those four words I will never forget: “You have breast cancer.” Four words that changed my life forever. I didn’t have the slightest clue exactly what it would look like, or how long it would affect me. I knew it was bad, but once you have the diagnosis you just press on with the treatment. That’s when I started this blog. That’s when all my friends started making a daily commitment to pray for me. That’s when my husband became a caregiver. That’s when my daughter was a freshman in high school and my son was an ROTC cadet in college. That’s when I met all the oncologists, surgeons, specialists, nurses and others on the team who would become my closest allies for the rest of my life.

Seven years have flown by in some ways, and dragged on in other ways. As I look back I am somewhat thankful I didn’t have a clue. In some ways naïvety is like comfort food. The less you know, the less you have to worry. I took it one step at a time, and continue to do so. Here’s what I do know…fighting cancer is a LOT of work. Don’t be naïve in thinking it will be easy. If you know someone who has been diagnosed with this dreadful disease, understand they are dealing with a lot. They may not even know all the ins and outs of the fight. I put together a brief recap of the past seven years. I don’t know, maybe it’s the seven-year itch. I thought it might be helpful to read the context.

12/12/12 – Diagnosed with breast cancer. Staged by the end of the year. Stage 3B Triple Positive Invasive Ductal Carcinoma. Cancer was in the right breast (9 cm) and several lymph notes. Treatment would begin next year, then surgery, followed by more treatment.

2013 – Port was surgically installed in January. Six months of chemotherapy (yeah, I lost my hair).  Radical, modified right mastectomy in July. Followed by thirty-three days of radiation. Finish out the year with infusions of Herceptin. I was deemed “cancer free.” They removed my port at the end of the year.

2014 – The Year of Reconstruction (several surgeries over several months to complete). Only God can make a real boob, but my plastic surgeon holds a close second. My hair was growing back. My mom passed away from melanoma while I was recovering from my DIEP Flap. It was a really hard year.

2015 – Back to life. Cancer is behind us, and we can move on. A few follow-up visits and I will be home free.  I was only inconvenienced by taking a pill every day (Tamoxifen) to decrease chance of reoccurrence, a bit of neuropathy, and some hot flashes, but I felt it was worth it. Life seemed to be getting back to “normal” again.

My oncologist moved to another facility and I was seeing the PA until they filled the slot. By the end of the year, I started noticing some pain under my left ribcage. PA said it must be muscular, since the pain would come and go. She didn’t do any X-rays or other scans at that time. Hmmm…

2016 – We moved houses this year, and while we were in between homes we figured if we were going to live in a hotel while waiting for our house to close, we might as well live in a hotel on the beach…the Gold Coast beach that is! We took a trip to Australia to see our friends and once again enjoy our “second home.” That was a nice reprieve.

I was noticeably sleeping a lot. Of course, we had just been on a long flight overseas, and we did move into a new house. One tends to overlook these things under such circumstances. I also continued to have pain on the left side off and on. In October, I went to my GYN for my annual check-up and she said, “Let’s do an X-Ray,” which discovered a mass on my ribcage. It was pressing against the lung, so they conducted a lung biopsy at MD Anderson a few days before Christmas. I remember the scheduler trying to talk me into waiting “in case something goes wrong,” but I insisted on getting it done. I got a new oncologist, and I really like him. I told him he could never leave as long as I live (which I hope is a very long time).

Diagnosed Stage 4 MBC (Metastatic Breast Cancer) just before Christmas. Future tests showed metastasis in several locations: 7 cm mass on ribs, lesions in spine, skull, liver, lungs. This time, we are here for “treatment,” and it will never be for a “cure.” While the oncologist was reluctant to answer the time question, the PA gave me 6-18 months. But God is not a God of the human calendar!

2017 – Port was surgically installed so we could start the year with another round of chemotherapy infusions (yes, I lost my hair…again), Herceptin and Perjeta for HER2+ every three weeks for life, as well as a different little daily pill for the hormone receptor (Anastrozole). By the end of the year, or shortly thereafter, all the spots in my bones, liver, and lungs have gone away. My body is stable. We will continue on maintenance biotherapy (infusions of Herceptin and Perjeta) every three weeks to keep it that way.

In addition to the treatment and staging scans, I have CT scans, bone scans, and an echocardiogram every three months. I also have a monthly shot to strengthen my bones (Xgeva). This was later switched to a 15-minute infusion of Zometa, which I only have to do every three months and they can align with my other infusions. They also take blood every time I walk into the building, probably gallons by now. Doctor visits align with all the scans.

Lymphedema seems to be getting worse since starting the new chemo treatment. My right arm is about three times the size of my left arm. I wear a compression sleeve 24/7.

One of the side effects they do not always tell you about is cataracts. Well, I ended up getting cataract surgery in both eyes in July of this year as well. The good news is, I can see 20/20! I just need to wear readers to see up close. New lenses were definitely worth the inconvenience.

2018 – Continue with maintenance meds. Toward the middle of the year, I started feeling dizzy. By December, I was unable to walk a straight line. My body was still stable, but the brain and body are treated independently as it pertains to cancer. MRI of the brain showed two lesions–brain metastasis in the cerebellum–enough to cause dizziness, but small enough to treat with targeted radiation (Gamma Knife). They added a neurosurgeon to my team of experts.

2019 – We rang in the new year with a big ol’ zap to the brain. MRI guided radiation (Gamma Knife) took place at the MD Anderson downtown location. There were three little spots; not just two. They zapped all three spots, and we all felt good about the prognosis. We took a picture of me just after they installed the “crown,” but I never showed it to anyone. I looked like Frankenstein.

In addition to all the maintenance medicine, doctor’s visits, and body scans, I added another radiation specialist and MRI of the brain every three months as well. The remainder of the year showed a decrease, then a disappearance of all three lesions. In addition, my body remained stable, so my oncologist started scanning my body every 4-5 months instead of every three. (I still have to get echos every 3 months.)

MD Anderson opened a new building in The Woodlands this year. When it is completely up and running, they will be infusing more patients than the main campus downtown. Yeah, let that one sink in for a few!

And that brings us to today! It is December 12th, 2019, exactly seven years since my first diagnosis. I am much more knowledgeable, much more clued-in, and after all of this, all I can say is “whew!” I recall the various hairstyles, short hair, long hair, no hair. I now have shoulder length hair.  As I wrote each phrase of this journey I recalled how many hours and weeks it took to accomplish these tasks; it seems so simple as I read it, but it was quite complex. I am so glad that much in the past! Now I can focus on staying healthy and staying stable. I am praising God for giving me the strength to make it through the past seven years.

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I continue to work full-time as a university professor. I teach doctoral learners online, with some travel to meet my learners face-to-face. Providentially, I stepped down from my role as faculty chair (I had 50+ faculty reporting to me from 2012-2016). This happened just three or four months before I was diagnosed with Stage 4 MBC. God knew!  My faculty schedule is more flexible, and I can work around my medical schedule.

Every quarter I look forward to the end of the term. And now, I am happy to see the end of another year. I enjoy my job, but it’s getting harder and harder to balance the demands of a busy job with my treatment and doctors and scans and etc. Tomorrow is the last day of my university’s academic term, and I will finish grading all of my classes within the next few days. It’s that time of year when I am so thankful to be finished! Then, I can relax and enjoy the holidays and the rest of the year.

Aside, over the past few months my left eye has been red, swollen, and inflamed. I have been to the optometrist multiple times, and he has tried multiple rounds of eye drops to no avail. He is referring me to an eye specialist to rule out metastasis.  One thing I know is this: when you have MBC, they always want to rule out cancer if there is an ongoing issue. I’ll see him after Christmas, but my prayer warriors are already on it.

2020 – I don’t know what the future holds, but I choose to live each day to the fullest. I do know we have some big plans for the next year. God is starting a new ministry in us, and we know He is not finished with me yet. 🙂 More on that next year!

Á la prochaine…until next time!

From Texas to Florida and Back Again

When we were asked to go to Florida for the months of November through January, I said, “Those are the best months of the year to be in Florida! Why not?” Of course we had to ask God if it was okay, and He confirmed this was the place as He had a special assignment for us. I have felt such a sense of peace about this decision from the git-go. It is definitely a God-thing.

We packed the car and drove the distance just before Thanksgiving. Long story shortened…my husband (and I) accepted a short-term assignment in Vero Beach, Florida. This is a joint effort between Texas and Florida Ministries of the Church of God (Anderson, Indiana) to help a large church in crisis. Tim is the “Bridge-Interim Pastor” for Pathway Church, formerly known as the First Church of God, in Vero Beach, Florida. They have been through some leadership issues and are in between pastors. They have lost members due to the crisis. Their interim pastor wasn’t able to come until after winter, so they needed someone to help fulfill the recommendations of their recent consultation and fill the gap. Tim was a good choice because the Texas ministry slows down this time of year, and this is what he does with churches all over the state of Texas. It’s a great fit for this assignment.

But what about chemo? Doctor’s visits? How will all that work? The church was most appreciative of the opportunity to have a state administrator serve during this time. They agreed to our conditions. They found us a house in Sebastian, with a garage and everything. I will travel back and forth to Texas every three weeks for treatment and scans or doctor’s visits as needed. Because it is one week out of three, I am scheduling everything during the week I am home. Sometimes Tim will go with me, and sometimes he won’t. We may fly or we may drive, depending on the circumstance. We will take the bike to Florida so we have it to ride, and it gives us two vehicles in each state. (My bike will remain in Texas.) We will be in Florida every Sunday as Tim is preaching, and they will live stream his sermons. While all the details are not yet determined, one thing is sure…I will see the grandkids while I am home!

Á la prochaine…until next time.

Mad Hatter Hotel Hopping

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Downsizing has evolved into homelessness. At this writing we are hopping from hotel to hotel until we land on a decision for the next chapter in our lives. Some days we feel like the Mad Hatter is speaking directly to us to run down the rabbit hole!

A brief history reminds us; we bought our house at a great deal, as an investment for retirement. It was way too big for the two of us, but the price we paid could not be passed up. We certainly enjoyed living there. Many family nights were spent playing pool in the game room, watching a movie in the media room, or sitting in the dining room playing games. Several Christmas photos were taken in front of the gas fireplace. The grandkids loved climbing the stairs, and Yoda got annoyed finding ways to stop them from doing so. Friends and family members have enjoyed our guest rooms. Many beautiful spring days were spent working on the back porch, as I watched my bluebirds raising their families from one season to the next. When we bought this house on the cul de sac, we thought we would be there until we retired. Our plan was to sell and downsize at retirement, as the profit would surely pay for a smaller home by that time.

Two months after the home purchase, I was diagnosed with Stage IV Metastatic Breast Cancer. Our retirement plan was turned upside down.

Jeremiah 29:11 (ESV) says, “For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.” We continued to seek God’s will for our future.

Retirement comes for most folks in their mid-60s, or even 70s. Terminal cancer has a way of changing perspective. Will I live long enough to retire? Will I feel good enough when I retire to travel and enjoy the retirement life? I hope so! I believe so! But there are no guarantees when you have a terminal illness. I am now half-way through the “average” 5-year lifespan for patients with MBC. Perhaps I will live to my 70s, and God does give me hope that I will! God is not a god of statistics. Even still, we are examining options for my early retirement to make this journey a bit easier to manage. As I said in my last blog, we are not merely existing; we choose to live.

As soon as we heard my body was stable, we put our house on the market.

It took a while to get an offer on our big, beautiful home, but when we finally did it happened very quickly. Mid-March we received a cash offer. The buyers wanted to close in three weeks as they were between homes and living with her aging parents. We had planned a trip to Scotland the following week…yikes! But when a buyer comes knocking, you don’t say no.  We immediately started packing the house, and then packed for our trip. It relaxing and enjoyable in the midst of this tumultuous time, but we came home and hit the ground running. Two days after we returned from our trip, the house closed. It was April 4th. We bought back a few days for $1.00, as part of the negotiations…just enough time to finish packing and move out, with the help of several friends.

It’s almost June, and we are still living in hotels and a couple of storage units. Fortunately Tim gets good deals and we travel a lot for his work, so this is not a totally new experience. We have been weighing all the options, but the final decision was based on a call from God. He said he has a plan for us. It’s a mobile plan. We will be living a nomadic lifestyle for a while, as we do ministry from the road. After much debate and indecisiveness, we finally bought a truck. Not just any truck, but a Super Duty Ford F-350 Dually, with 4.10 axle ratio. We also have a Heartland Cyclone 4007 (Fifth Wheel) on order, and if all goes well we will pick it up on July 5th. Between now and then…more travel.

À la prochaine…until next time.

“You’re entirely bonkers. But I’ll tell you a secret all the best people are.”
Lewis Carroll, Alice in Wonderland

Christmas Chemo

Today is chemo day. It is also the exact date 6 years ago when I was first diagnosed with breast cancer (12/12/12).  Six years…wow. Time flies when you’re having … wait … what is that saying again?

I brought my nurse a blue mitten cookie from Panera Bread and she gave me a big hug. It warmed my heart like a mitten warms the hands. I don’t think we can hug our caregivers enough. They need to know we appreciate the work they do. I know it’s a small gesture, but I hope it makes her day.

As soon as I arrived, another nurse came scurrying into my room, in a bit of a panic, looking for barf bags. Yep, that’s what he said. Twice. Folks, this may be TMI, but these little rooms are not very soundproof; they are only closed by a thin curtain. I feel bad for the guy, really. My heart went out to him. No one should have to go through this. But, let’s just say, I am glad I brought my earbuds today or I might have also needed one of those bags. I’m listening to Christmas music on Pandora while getting my treatment. Francesca Battistelli has such a beautiful voice. Frankly, I could sit here and listen to her all day. Ahh. Much better than the alternative noises resounding in the hallway.

When I finish getting chemo, my nurse will leave the port accessed as I have my tri-monthly scans all day tomorrow. There is something comforting in knowing how to work the system. I called ahead and got an order to leave it accessed.  Now I won’t have to get poked with an IV tomorrow, risking another blown vein.  Again…comfort.

Even though it is time consuming, I am at peace knowing the juice going into my veins is keeping the cancer at bay. I fully expect to hear everything is stable after my scans tomorrow as well. When I spoke with the bone scan technician, she was so happy to hear my port will be accessed. That will save time. The scans are set for 9:00, 2:00, and 5:00, but they usually try to do them closer together when I arrive. Hopefully I won’t be here another whole day.

I got my hair colored this morning before chemo, so it has already been a busy day. Thanks to Tiffany for her willing spirit to try something different; she applied the HairPrint that I usually do at home. It’s an all natural product, but a bit messy when I do it.  I wanted my hair to look pretty for tonight’s annual Christmas party for the Breast Friends support group, which is where I’ll be heading as soon as I finish my treatment. Maybe I’ll see some of you there!

Á la prochaine … until next time…

Scans

Several beautiful well-behaved Labrador Retrievers are sitting on and around a CT scan. The meme reads, “Sorry, sir, we can’t do your CAT Scan, but we can give you a LAB Report!”  Insert rimshot.

Doctor says to the patient, “I have the results of your MRI.  Half your brain is clogged with passwords and the other half is clogged with user names.”

I am amused by the plethora of jokes and memes regarding CT scans and MRIs.  Laughter is good medicine, and I love a good pun. I think we can all relate to the MRI joke with the new securities and technologies requiring newer and longer passwords–different user names for each site we visit–that are clogging our drains…eh hem…I mean brains.  My employer just announced the use of new VPN security due to a hacker getting into the system and diverting an employee’s paycheck! Yeah, I’ll take the extra precautions even though my brain is full of a few extra passwords.

Every three months my oncologist sends me for tests to make sure the chemo is doing its job:  CT scan of the abdomen, pelvis, and chest as well as MRI of the brain. Sometimes he does the bone scan but it doesn’t really tell him as much, so he didn’t do it this time. I didn’t mind not doing it as it meant one less visit to the hospital.

For about a year now the organs have been stable without any evidence of disease.  I am continually praising the Lord for what He is doing in my life.  Two tiny spots on the brain could be anything, but as long as they do not grow we must be doing something right.  Apparently, many people have spots on their brain and don’t even know it, so I guess one could say I fall in the ‘normal’ category!

In case you have forgotten, or don’t know my history, this round of treatment started with a diagnosis of metastatic breast cancer in December 2016, nearly two years ago.  I had a seven centimeter mass on my ribcage, spots in my spine, skull, ribs, as well as liver and lungs.  Since then, all of those spots have completely disappeared.

Today was another follow-up with my oncologist to go over Friday’s test results.  I am never worried, but always a little curious, to know what the results will be. Whatever will be, will be, right? Worrying only takes time away from more important things. I admit it is always nice to get the thumbs up and hear the words “stable” once again.  I think he is a bit surprised each time I come in.  We talked briefly about the treatment plan, e.g. continuing with infusions of Herceptin and Perjeta every three weeks, as well as daily pills (Anastrozole).  If it’s working, don’t fix it; so, we’ll keep plugging along.

I continue to work, and I continue to ride the Harley, and I continue to spend time with my family…not necessarily always in that order. LOL.  I will continue to do all of these things as long as the Lord gives me breath, strength, and adds to the days of life.  Everything I do is to glorify Him. People, God is evident in my life! I couldn’t do this without Him.

“You will live a long life and see my saving power.” Psalm 91:16 CEV 

Á la prochaine...until next time.

 

Students of BC

I never know what may take place, or what I might learn from my students when I go to the three-day residencies each quarter.

It took me by surprise when one of my students confessed he had purchased my book.  He got it on Amazon. Typically, I assume the purchaser is buying the book for a newly diagnosed friend or family member. However, it wasn’t for anyone else. It was for him.  Admittedly, he wanted to know more about the professor who was teaching his class. But the story went a little deeper than that. He shared that he grew up a “mamma’s boy,” aware of the yearly check-ups when his mother was screened for breast cancer. She never got cancer, but he talked about how much it affected him as a child, worrying about whether his mom was going to get cancer.

He had already read the introduction, and was planning on reading the whole book. I think it may have brought some closure to his fears about his mom. He was grateful for what I had done by putting this book together, and was genuinely touched by the book and its contents. He thanked me for taking the time to write the book, and I was touched by his honesty.

In a sense we are both students.  He is getting a Ph.D., and I am a student of breast cancer. It isn’t a journey I chose, but I am constantly learning more about breast cancer and how to fight it. I am no expert, and there is still so much more to learn.  Each new thing I discover, I hope to pass on to help someone else.

You never know who you might impact with the work that you do.  Keep doing what God wants you to do and people will be blessed.

A la prochaine… until next time.

 

Who will take care of me?

I just realized it has been three months since my last blog. And it was the week of Residency, which is this week as well.  What are the odds…Perhaps my quantitative friends can help figure that one out.

I had my chemo and XGeva this morning. My nurse was rushing like a bandit because she knew I was hoping to get out early. I got in early, about 30 minutes. That’s usually unheard of.  Unfortunately we can’t rush the chemo. Drip, drip, drip. It takes at least an hour regardless of how much we try to force it.  Then there is the preparation, and the flush in between, and after, and the Heparin. All in all, it takes a solid 90 minutes even if the stars align.

I’m sitting at Panera waiting for my hubby to join me. I was rushing to get out of chemo because he had a doctor’s appointment, and I wanted to be there.  My nurse could sense the urgency, as I don’t usually ask them to hurry up.  This is not your usual, ho-hum, mundane visit to the doctor. He’s been having symptoms. Headaches and such.  His doctor ordered a brain scan. They found “something.”  Today’s visit with the neurologist would help determine what they found. Unfortunately, he made it to the doctor before my last drip, so I’m waiting for him to tell me the results.

It’s always hard to wait for results from a scan, test, or other medical procedure, but I have learned how to be patient during the waiting.  Endurance produces character (Romans 5:4).  Last week I had a moment. Sometimes we joke about death – it may sound morbid but it’s our way of dealing with life with cancer. In the midst of laughing I had a sad thought. If something happened to him, who will take care of me? Shake it off…it was only a momentary lapse from the usual positivity we embrace.

He’s here…………….

Praise God my hubby came bearing good news! The spots on the brain scan, which were confirmed by the neurologist, are like age spots on your skin. (Ha! Despite his boyish face and blond hair, I knew he was aging.)  The doc says there is no concern. They ruled out all the biggies like MS, stroke, blockage, etc. In fact, it is likely the headaches created the spots. (I didn’t know headaches could do that.)  He does have some stress in his life, as any caregiver can relate, which may be contributing to the symptoms. The doctor recommended watching his cholesterol and blood pressure. Tim told me this as he was salting his apple.

Basically, the doctor ordered my hubby to de-stress and decompress.  Sounds like it is time for another ride.

À la prochaine…until next time.

Work, Work, Play

Okay, I admit it. I’m a bit of a geek. Or a nerd. Or more likely a combination of both.  I love to gather knowledge, and practicing my trade feels a bit like playtime.  To demonstrate just how geeky I am, I looked up the difference between the terms.  Slackpropagation has a very interesting chart for the rest of you geeks out there.

I digressed.

Still working full-time, I am helping doctoral students progress a few baby steps forward toward achieving their Ph.D. This weekend’s intensive Dissertation Research Seminar was spent honing topics, research methods, theoretical foundations, sampling plans, ethical considerations, and more. Each time someone received an email saying their topic was endorsed, the entire room burst into applause.

They are forging ahead on dissertations about human trafficking, Special Operations fathers, equine-assisted therapy, transgendered youth, supervision of counselors experiencing vicarious trauma, and so many other very interesting research topics related to our field.  It is encouraging to see people struggle through the process, and come out successful.  Many of these students are first generation graduate learners, so it is quite an achievement.  To know I had a small part in their success gives me pleasure.

Tomorrow’s final session consists of presentations, where thirteen learners will share what they have accomplished so far.  Peers will be their audience, and feedback will be welcome as collaboration strengthens their research.  We will all leave in our airplanes or cars to our respective homes, some in the U.S. and others overseas (one of my students flew in from Germany).  The journey will take them one step closer to achieving their dream.

One day they will write up their findings and submit to a professional journal, or present at a national conference.  Who knows, you may see their names on national television when they have become experts in their field.

Life goes on…are you living it?

À la prochaine (Until next time)…