Category: Stage IV

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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!

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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!

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My Bones are Strong!

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Last week, before we left for Florida (more on that in another blog), I went for my first bone density test in several years.  This is by far the easiest of all exams. You lay on the table and the machine seems to take a photocopy of your bones. It’s painless, and there are no invasive needles to accompany the exam.

The last time I had a bone density test, I was told I had osteopenia. The next step is osteoporosis.  Of course that didn’t sound good. Since my MBC diagnosis, I have been fighting bone mets, as you know. The doctor also prescribed Xgeva in the beginning, and now I am on Zometa. It’s a treatment to strengthen the bones. Our bones are similar to a suspension bridge, with strategic holes to allow flexibility. Cancer in the bones begins to eat away and create even larger holes, which puts me at risk of fractures.  The medicine is designed to make my bones more solid. Not as much flexibility, but less chance of fractures as well.  That could be a totally incorrect explanation, but it’s the best I can do.

Long story short…instead of moving toward osteoporosis, I now have normal bone density!  That, in itself, is a miracle.  I honestly was not expecting that. I thought for sure I would still have osteopenia at best. But God is good. I believe He is strengthening my bones with each infusion. It’s not just the medicine at work here people. It’s the movement of the Holy Spirit at work in my body, fueled by the prayers of His people.

This reminds me of the story of the Valley of Dry Bones, in the book of Ezekiel, and the song that goes along with it.  We used to sing it in children’s church, and church camp. Do you remember singing this with me?

Them bones, them bones, them…dry bones. Them bones, them bones, them…dry bones. Them bones, them bones, them…dry bones. Hear the Word of the Lord! 

Bones represent an indestructible life in Scripture, according to one author.  That’s about right! No matter what some may think, cancer cannot destroy my life! And now I have the bones to prove it.

Á la prochaine…until next time.

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A Dry Eye for Education

Ghandi once said, “Live as if you were to die tomorrow. Learn as if you were to live forever.” We do know how to live! And education is one of my core values.

I consider myself a lifelong learner, and I quite enjoy sharing the knowledge I have with others. I went to the eye doctor this morning and learned something about the oil that is produced by a gland I can’t pronounce. He showed me the video where he tried to express mine, and it was  ineffective. This contributes to my dry eye condition. I didn’t even know the Meibomian Gland existed until today. Our bodies are so amazing. So many intricacies! I wondered if this was somehow related to my cancer, yet I have had dry eyes for many years.

A young apprentice was also learning, trained up by the female assistant who interviewed me about my history. “Modified, radical, right mastectomy” rolled off my tongue, along with chemotherapy, radiation, reconstruction, and other medical details. They both shared an interest in my story, followed by the apprentice demonstrating his lack of knowledge as he shared his Grandma had the “worse kind of cancer,” where they had to surgically remove her breast.  I didn’t fault him. Many people do not know what a mastectomy is, or do not understand when I tell them I was diagnosed with “Stage IV, Metastatic Breast Cancer.” I probably would have asked the same thing when I was his age, untethered from chemo and care.

I’m trying the eye mask which contains tiny crystals which, when warmed, serve to express the glands. I’ll keep you posted on its effectiveness!

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Today is also chemo day.

Sometimes friends and acquaintances will ask the question posed by both my nurse and the optometrist’s assistant, “how many more infusions?” Or they will ask if I am done with treatment. Education follows, as well as my acknowledgement of the many women who are living 10, 15, or 25+ years with MBC.

I am a lifer. While my body is “stable,” and the scans do not currently detect this horrible disease in organs or brain, I will never be deemed by the doctors “cancer free.” I will never again ring the bell I heard tolling at the clinic earlier today. I will hook up to the machine and my veins will drink its fluid every three weeks…for the rest of my life.

I don’t say this to get sympathy, or pity. My eyes are dry. There’s no harm in asking, if you don’t mind the education.

Á la prochaine…until next time.

 

 

 

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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

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Merely Existing or Living with MBC?

Oscar Wilde said, “To live is the rarest thing in the world. Most people exist, that is all.” When I was diagnosed with Stage IV Metastatic Breast Cancer, I woke up. I had been existing, but had I been living? Retirement suddenly seemed out of reach. I envisioned existence on earth to be much shorter than I had always anticipated. I contemplated whether I would live to see another Christmas, birthday, or grandchild enter the world.

That was December 2016, and I’m still here! We have since had three Christmases, Easters, birthdays, and added two more grandchildren to the Nana and Yoda clan. You know if you follow my story, my body is stable and the treatment is working. I am blessed, and I am grateful.

After the initial shock dissipated and we had a treatment plan in place, my husband and I set a goal: to live.  Enjoy the company of the ones we love, stop to smell the roses, smell the rain, study the Bible, play, travel, activate the brain, help someone, relax, listen for God’s voice, have a deep conversation, learn something, laugh, dream of the next big adventure, prepare for the future, take care of my body, attend a support group, savor food, share life.

Cancer may have altered my existence, but it cannot take away my life.

I admit it is tiring at times. I move slower than I used to. Sometimes my body hurts. My mind is not as sharp as it once was. Occasionally I take a nap or put up my feet. Caring friends often tell me I am too busy. I should slow down. And sometimes I do.

Yet, even in the slowing down, I choose to live. We do not want to merely exist, trudging from sunup to sundown, grinding the same routine. Determined, we live life filled to capacity and overflowing.

What about you? Do you merely exist, or do you live?

Á la prochaine…until next time.

“A thief comes only to steal and kill and destroy. I have come so they may have life. I want them to have it in the fullest possible way.”  ~Jesus (John 10:10, NIRV)

 

 

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The Russians are coming…

While the radiation oncologist is with another patient, our nurse shared some interesting  anecdotes regarding patients from around the world. Apparently Russian patients don’t get very good care in their country, so they tend to over-report the small stuff in hopes of getting the bigger concerns taken care of. Chinese are the opposite. Fear of big brother and shame prevents them from sharing enough information for doctors to assess. Arabic men do not permit the women to speak, so it is interesting being a female nurse when they come in for treatment.

The most interesting story was how the Danish handle the ports. When their children come in to the clinic with a port already installed, it is never covered, and it is usually infected. They immediately have to go into surgery to clean it up, cover it up, and prepare it for future use.  I left feeling grateful that I am in America where we get good care; we can tell our doctors what we are experiencing without fear of repercussions, and we do not have to fly over the pond to get there.

I also left with good news! The MRI shows no signs of progression, no new lesions, and in fact the old lesions are gone or insignificant little blips. She was very pleased with the results. I will follow-up with MRIs of the brain and see the radiation oncologist every three months for the next year. Then I will graduate to every four months, six months, and so on.  Yesterday’s CT of the chest, abdomen and pelvis, in addition to the whole body bone scan proved similar results. My body is stable! I’ll take stable any day.

This doesn’t mean I don’t have Stage IV Metastatic Breast Cancer any more. They will always call me Stage IV. But it does mean my body is responding to treatment and God is apparently not finished with me yet. I am anxious to see what He has in store for our next big adventure!

Á la prochaine….Until next time…

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Chemo, TPA, and a shot in the belly

I was supposed to get my infusion last week, but I was running a fever.  After just getting over a two-week long battle with a cold, I woke up with yet another sore throat on Friday.  The doctor said I needed to wait for chemo. The Nurse Practitioner gave me some antibiotics and steroid medicine to clear up my head.  That was some powerful medicine;  I had trouble sleeping one night because of it.  Not to mention things were a little hectic over the weekend with our family.  Drama…That’s all I’m going to say about that.

There was drama on the highway this morning as well.  Cars came to a screeching stop, and Tim had to veer onto the shoulder. Crazy traffic! That started us off behind schedule. Drama in the vein highway followed.  Once again the nurse had some trouble getting good blood return. This has happened a few times over the past year or so. She put in a TPA which lasted about 30 minutes, and then it was fine. I was happy not to be stuck in the arm with a needle, as she was willing to wait to see if we could use the port. Once the familiar sounds of the machine started whirring while pumping chemo into my port, I was relieved to get back on track.  My radar elevates whenever that crops up. If something happens to my port, they won’t let me leave until it is resolved (which could mean surgically removing it).  One of the many possible inconveniences with this disease that I have learned to accept.

I did get stuck with a needle after all, a small injection in the belly.  The stars aligned and I was able to get it on the same day as chemo.  Xgeva keeps my bones from breaking, so I gladly receive it.  I have read some horror stories by women in my MBC support group.  I feel like I am one of the “lucky” ones, as mine is currently stable and under control. The cancer is in places that have not yet caused me to lose my ability to walk, run, ride the motorcycle, dance (Zumba!) and simply enjoy life. Yes, I have back pain that nags me throughout the day, and yes, I have to go to treatment more often than I would like, but I have so many things to be grateful for.

What are you grateful for today?

Á la prochaine…until next time.

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Gamma Knife Update and a Bit Nostalgic

I realized I had not updated my blog since the Gamma Knife treatment. That first week was interesting. I was swollen across my face and looked like I had been in a brawl. My eyelids were screaming at me. I hibernated to avoid terrifying the neighbors. The swelling went away about a week later.  I’m still sleeping on two pillows because I feel a little pressure around the pin sites when my head is not elevated. I’m also waiting to go back downtown for the follow-up MRI to see if it worked. I think it worked. In the meantime, I have noticed some improvements. All last year I was feeling increasingly dizzy. I would hunt for the wall to support me when I first woke up, the world spinning around me. Now…no more dizziness! I had one day when I felt a little dizzy for a few minutes, but I can sense a significant difference. Maybe it’s all in my head (pun intended LOL), but I think the Gamma Knife made the difference. I thank the Lord daily for the treatment options available to me, keeping my body stable and going.

Today is chemo day. I came yesterday to get my monthly shot of Xgeva, and today I’m here for my infusion of Herceptin and Perjeta. My yesterday nurse asked why I didn’t move the shot to today and save a trip.  Duh! Why didn’t I think of that? That would have been a good move. But, it’s okay. I don’t mind. It gave me a reason to get out of the house on a cold, wintery day.

The nurses here are so kind and helpful. They did use my bloodwork from yesterday so I didn’t have to get poked again today. At least, that’s what I reasoned until a few minutes before my appointment when I realized I had not put the numbing cream on my port. Yeah, I do have to get poked, just not in the arm. Yet another silly blonde moment.  The cream really helps, and apparently I didn’t have it on long enough today–ouch–lesson learned….

Every time I come for chemo, I get a different nurse. I was reminded today that I have a one in twelve chance of getting the same one. I’m pretty sure I have run through all twelve of them by now, as we know each other by name.  It’s ironic because when I first started treatment in 2013, I had the same nurse several times in a row. Sometimes the lottery works out that way. I thought she was my own personal nurse until I got someone else. “Where’s Cathy?” I asked. That’s when I learned how the system actually works. I’ve had Cathy several times since then, but not today.

It is encouraging when I have an opportunity to converse with the nurses about life. Many of them are about my age, and we have similar life circumstances.  Today, my nurse and I collaborated on the joys of “raising” our young adult “children.” Feeling a bit nostalgic I don’t think we will ever quit worrying about our kids, regardless of chronology.  Now that they have families of their own, we have even more people to worry about. If you have little ones, enjoy the vexing while they are young. It is only temporary. Play with them. Love them. Teach them manners. Let them mess up the house, and then show them how to clean it up. Read to them. Bathe them. Laugh and cry with them. Say no to them, and say it firmly. Hug them and take good care of them. Discipline them. Don’t spoil them, but give them what they need. Don’t let the devil delude you into believing things will get better when…they are out of diapers…they go to school…they grow up…they move out…they have a family of their own…when…when…when. Don’t wait for life to pass you by while you wait for it to get easier. Life only gets more complicated with each passing moment. The future is inevitable and it will be here in the blink of an eye. Embrace whatever present is standing in front of you. It’s called the present because it is a gift. Unwrap it and live life today to abundance and overflowing with joy.

Jesus said, “A thief comes only to steal and kill and destroy. I have come so they may have life. I want them to have it in the fullest possible way.” ~John 10:10 (NIRV)

Á la prochaine…until next time…

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Gamma Knife

Today was a big day. Our drive downtown was fairly uneventful. The traffic was lighter than usual; I imagine many folks are taking off work for the Christmas holiday weekend, and school is out for the winter break.  We valeted the car and got to my appointment about 30 minutes early. This is my first visit to the brain and spine center, but we have been to the main building before. If you have never been downtown Houston to the MDAnderson center, it is like a city all of its own. I remember the first visit here six years ago, when I was going through all the initial staging. I saw a sign to the aquarium, and I thought they had an actual aquarium here. Turns out, that is the name of one of their cafes. (Egg on face.) But, in my defense, it IS a very large place.

As we sat in the waiting room playing games on our iPads and listening to Property Brothers in the background, I asked Tim if he had any questions. He quipped, “will it kill much of the brain? Or better yet, will it restore any of the brain?” Yep, that’s my hubby.

All joking aside, we spent the whole day learning about this next phase of my cancer journey, the Gamma Knife procedure, and what it entails. I did break down and cry at one point as it is a bit overwhelming. But, thankfully, the wave of emotion didn’t last long. The nurse (Tina) was really sweet as she talked about the process and handed me a tissue.

So much for the “one and done” approach we had naively imagined. I should know better. Nothing is quick and easy when you get involved with cancer treatment at MDAnderson, or anywhere for that matter. The main campus is known for even longer waits. Today was no exception. After a thirty minute wait (an hour really, but we were 30 minutes early), Tina escorted us into a room she “stole,” because the others which belonged to my doctor were full. She took my vitals, described the Gamma Knife process, and discussed possible date options.  She also informed us of a YouTube video explaining everything MDA does with this treatment. We really liked her.  She was down-to-earth and truthful about the wait times as well.

Next, we were visited by the Physicians Assistant.  She was also very sweet and knowledgeable. Another explanation and some tests of strength and balance. Tim is my levity as he likened my walk across the room to the DUI test.  Not that I would know…fortunately.

Thirdly, we were visited by our very tall radiation oncologist, Dr. McGovern, who will follow me through all of the Gamma Knife procedures, now and later if needed.  Most likely there will be more; of course, no one is willing to predict the future. She explained how Gamma Knife actually works. It’s quite interesting, actually. The machine has 192 Cobalt beams that intersect at the exact location of the lesion. By itself, each beam is relatively harmless. But when they intersect, they send a combined large dose of radiation for what I consider an explosion into the lesion which “nukes” them. The table on which I will lay moves me into position so the beams intersect at the exact right location.  In this respect, a head frame is imperative (more on that in a minute). The frame prevents me from moving my head even a mm to zap the wrong spot in the brain. Each lesion takes about 15 minutes, so the entire procedure will be about an hour. This is just an estimate until we get the final MRI the day before the procedure.

In addition to a new radiation oncologist, I now have my very own neurosurgeon. “Is there any specialist I have not seen?” I wondered. Apparently, this is also required when you get the Gamma Knife.  I was fortunate Dr. Ferguson was available to see me today, so I don’t have to come back another day.  Initially they said 3:00, but we came back after lunch and I got a call saying to come on up. That was a real blessing! Lunch, by the way was delicious. We had crepes at Sweet Paris downtown.

Dr. Ferguson is the exact opposite in stature to Dr. McGovern. I believe she said she is West Indian; Tim missed that part of the conversation as he left the room to go find his Diet Pepsi which he left in the waiting room (and I’m the one with brain issues LOL). Funny thing is, he couldn’t remember which room I was in, so he opened the wrong door. Another doctor had to help him out. He opened our office room door and said this gentleman was looking for a good-looking wife, and since I was the best looking in the hallway would I take him. Yeah, I guess so.

Anyway, I digressed.

Dr. Ferguson asked if I wanted to see the pictures from my latest scan, and of course we said yes. The spots are very tiny, but I could see them as well.  To do this very precise procedure, one has to wear an aluminum frame, which I mentioned earlier. From hereon, I will dub it my “bedazzling crown.” I may not be a monarch, but I sense this crown will represent victory and triumph, (as it does for the royals), and represents power over this awful disease. Wearing it will enable me to feel victorious. I say it is bedazzling because I prefer to feel like I will be wearing something beautiful over a medical devise, for one. Also, when I think of the radiation beams attacking the lesions, I imagine a big firework display going off inside my head. THAT is bedazzling.

One responsibility of the neurosurgeon is to attach the crown to my head. Basically, they screw it in place. Do you want to hear more? I didn’t…feel free to stop reading. She is also now connected to me in the event I ever need brain surgery. Wow. I know some people who have had brain surgery, but I never thought I would think of that for me.

History.  All five professionals seen today took note of my history.  It’s amazing how they can summarize six years of treatment in a manner of minutes. Since 2012… Chemotherapy, mastectomy, radiation therapy, continued Herceptin through year one, reconstruction, and Tamoxifen until the MBC reoccurrence in 2016. 2017 started with more chemotherapy, Herceptin and Perjecta every three weeks for maintenance, with daily doses of Arimadex and a shot of Xgeva every month.

In January of this year we discovered two tiny spots in the brain. My medical oncologist sent me for an MRI after Tim astutely noticed I was unbalanced and a bit more fatigued.  These have been watched regularly, with no growth until the last scan. They are apparently growing at a snail’s pace, yet now there are three.

Treatment.  Mostly what we heard today was good news. It’s easier to treat these lesions when they are small, and there is a less than 5% chance of brain damage to the surrounding areas, much less than treating larger lesions. I also learned that the MRI scans I have been receiving take larger slices than the MRI they will do at MDAnderson. The day before my procedure, I will go in for another MRI, bloodwork, and training by the nurse. They will access my port so I don’t have to get an IV. The thinner slices on the MRI will uncover any other possible lesions, which will all be treated at the same time with the Gamma Knife.

The day of the treatment sounds like an exhausting day. While many people choose to work the day after, I am hoping to get this done over the break. Then I can rest before going back to work. I have to fast after midnight, and arrive early in the morning.  They will install my crown, do another MRI, and wait for my treatment time. I’m sure I’m missing some steps, but one thing I remember is that I will sit around and wait with my crown attached to my head until it is my turn for the Gamma Knife. They do three per day, so I could be first, second, or third. There is no specific time frame. They will bring me food, but otherwise I will sit and wait. During the treatment I can listen to music. Afterward, they will watch me for an hour and then I can go home.  We are hoping for an appointment on January 2nd, which means all the pre-treatment will be done on December 31st, since they are closed on New Year’s Day. Looks like we will get to see fireworks two days in a row.

We learned a lot — more than I was bargaining for.  We are on information overload once again.  It was a bit daunting. However, regardless of how we may feel at times, I know it’s going to be okay. God is on my side, and He is watching over me through this whole process.  This song by the Piano Guys always gives me a pick-me-up.

A la prochaine…until next time.

 

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