Neuro-Ophthalmologist (An Eye Doctor With Multiple Specialties)

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To recap, I went to this eye appointment because Dr. Boeckman (my regular Optometrist in Conroe) and Dr. McGovern (my Neurosurgeon at MD Anderson) both referred me. They thought it would be a good idea because I have double vision, which has gotten progressively worse over the past several years. I wear glasses with prism to counterbalance the double vision. (I also have progressive lenses to help with reading, but that’s not abnormal for a gal my age 🤣😂🤪.)

As it turns out, my eyes are fine! My brain, however, is another issue 🥴🤪. It’s my brain, or rather the result of previous brain lesions and the residual effects of the gamma knife radiation treatment, that are causing my symptoms.

I guess I thought once they eliminated the brain lesions things would go back to “normal.” As I’m still learning, every treatment or phase of this disease puts me into a “new normal.” Brain metastasis is no different. The lesions followed by gamma knife radiation treatment have affected multiple areas of my body. I didn’t know there could be this many correlations, but it turns out there are. I’ll go through each of them and talk about what I learned, and what we can do about it, if anything.

The night before my appointment, I flew in from Idaho Falls, Idaho, where my Homey and our Roamy are. (We have recently started calling our Roam Home “Roamy.” ❤️)

Enterprise gave me a great deal on a rental car. I did the “mystery” car option, which saved me money, and the worker said to take my pick of any SUV in Aisle 3. I chose the Jeep Grand Cherokee. It was clean, smelled nice, and was fun to drive. It rained the whole time I was in the Houston area, so I was happy to have a more substantial vehicle.

My plane got in after dark, and I drove about 30 minutes to my hotel from the airport. I have to admit, Downtown Houston is really pretty at night!

I spent the night in a hotel near MD Anderson so I could walk or take the shuttle. Plus, I would not have to pay for parking at the hospital or deal with the morning downtown traffic. Have I told you how much I detest driving in downtown Houston traffic 😂🤪? I took the shuttle over (it was raining), but I walked back the hotel rather than waiting (there was a break in the rain).

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I was on time to my appointment. They said to plan on a three hour visit, which I did. My entire appointment took about 4.5 hours. 🙄 😳

First the tech did a bunch of eye tests to look at vision, peripheral, colorblindness, pressure and more. Similar to the annual eye doctor checks, only more in depth and slightly different tests. They also took vitals (they ALWAYS take vitals). Mine are good. 👍

Next the OD (optometrist) and PA came in to see me. He gave me his card, but I don’t have his name in front of me. He was very thorough, and didn’t seem rushed at all. They both checked my eyes, did a bunch of tests on the double vision and prism, and talked to me about why they think this is occurring. He found some slight worsening in my double vision since I saw Dr. Boeckman and got my new glasses in April. I get a new script and new glasses every year.

He was the first to tell me I had a TBI (Traumatic Brain Injury) from breast cancer lesions and gamma knife radiation treatment. This is causing my double vision, because the lesions occurred in the cerebellum which controls balance and vision. Incidentally, I had severe dizziness in 2018, which prompted the first brain MRI when we found the lesions. I continue to have mild dizzy spells, but nothing like when I had the brain mets.

The Optometrist gave me a helpful tip for dealing with vision and balance issues. Always look with your nose. E.g. point your nose at what you want to look at, and it will help your eyes to come together better. This may help with walking, especially in precarious places like hiking near a cliff or going up a staircase.

Dr. Al-Zibidi, Neuro-ophthalmologist, was last to see me. She had reviewed my history, and then she performed her own exam. She looked at my eyes, then dilated my eyes, then examined them again. She was very thorough. She’s an Associate Professor with MD Anderson, and a very good educator. She said my eyes look good!

She further expanded on what the optometrist had said. She explained how our vision works with the brain, how mine has been impacted by the brain Mets and gamma knife radiation effects.

She described how the vestibular system works, and explained some medical terms like occipital vestibular and gravity vestibular. Basically, if I understand it correctly (I’m not that kind of doctor 🥴), the vestibular system involves the connections between eyes and inner ears, and extremities and the ears, and sends messages to our brain. All of these connections are translated by the brain, in the cerebellum. That’s where I had the three brain lesions in 2018 that were treatment with gamma knife radiation in January of 2019, so my brain doesn’t always “interpret” the messages correctly that are sent by my vestibular system.

All this to say, having a history of brain lesions and radiation can cause many things that are going on with me, even years after the radiation treatment. These symptoms may sound daunting when we look at them all together, but I have been managing them well. Most are mild enough we don’t have to worry at this point. We will continue to watch in case things get suddenly worse.

I have double vision, abnormal gait, posture instability, and problems with depth perception. This results in dizziness at times as well as occasional headaches.

When I take a step, sometimes my brain does not interpret the step correctly. It “misaligns,” and tells my body the step is further away or closer than it is. For example in the airport I was having trouble walking in a straight line. People were trying to pass and they couldn’t figure out which side to pass on 😂😂. I blamed it on my suitcase which has a mind of its own. It does 🙄, but I probably could not pass a sobriety test if I got pulled over and the officer directed me to walk the line.

My steps tend to be heavier, as my body is trying to feel the gravitational pull (gravity vestibular). It’s the same concept with people who have neuropathy (which I also have). My mom had diabetic neuropathy and I could see it in her gait. Mine is from treatment. We “trudge,” because our body is putting the full foot down so the brain can interpret the level of gravity which connects to the foot. Vestibular issues can make one feel like you are “floating,” because of the miscommunication between the brain and gravity. (That’s fun 🤪 🙄). I can only explain it like I’m wearing big heavy boots for walking on the moon; I “stomp” to stay grounded. It’s not intentional, but my body walks that way. Sometimes I can intentionally walk differently, but it makes me feel uneasy. Mine is not nearly as bad as some people have it, and for that I am grateful. However, if you ever pay attention to how I walk you will probably witness the moon walk.

I tilt my head to compensate for the vertical double vision (I didn’t really know I did that, but the doctor saw me doing it). I feel a bit dizzy at times, like the room is spinning, especially when I first get up. It goes away quickly. I just have to sit a moment and move slowly. Head tilting can also cause issues with the spinal column alignment, and produces hard knots in my neck. Tim is constantly massaging my shoulders, but the tightness in my neck never really goes away. (Ooh, maybe I can get a doctor’s note to get regular massages covered by my insurance! Just thought of that. 🤩🤩)

Sometimes my brain does not interpret depth perception properly, which makes going up and down steps a bit more challenging than it used to be. I am much more cautious getting in an out of a vehicle, walking around curbs, going up/down steps, and I have actually felt paralyzed at times when a step “seems” too hard for my body to manage. This happened to me when we were hiking in Colorado, and again at the Devil’s Canyon Overlook.

If it’s a set of steps made out of rocks on a hiking path, where the steps change shapes or size from one to the next, I have to stop and let my brain figure out how to take the next step. Otherwise I feel like I will fall. My fear of heights starts kicking in and I start to panic. I have to take deep breaths and let my eyes focus on the task at hand.

I haven’t actually fallen yet, and hopefully I can continue to prevent that. I often rely on Tim and sometimes I use a walking pole to feel confident with each step when hiking in unfamiliar surroundings. Tim lends a shoulder whenever we are going up/down a regular set of stairs like in the Capitol buildings.

Even swallowing takes a bit more effort than it used to, which is apparently also connected to vestibular issues. I get hiccups more than I’ve ever had in the past (mainly while I’m eating). I had no idea all these things could be related 🤷‍♀️🤷‍♀️.

These symptoms in combination sound quite daunting, and I suppose they could be if I choose to let it be, or if my circumstance got worse. But it doesn’t currently interfere with life. It’s more of what I think of as an inconvenience. It may stop me for a momentary pause, and people may look at me sideways 😁😆, but I just keep going. I don’t let it get me down. I don’t let it prevent me from living life and challenging my body a bit.

Honestly, it’s good to finally have some answers on the “why” questions to all these little physical annoyances. All of this because of a traumatic brain injury. Who knew?

And maybe a little extra because I’m getting old. 😂 😂 🤪 🤪

The doctor said we can work on the gait and posture with PT/OT, but I’m not a fall risk so I don’t really need (or want) to do that right now. They can’t do much for the double vision except continue to put prism in the glasses. Horizontal double vision is easier because there’s a wider field to work with. But mine is vertical (left eye is higher than the right). They can only put so much prism before it becomes distorted, making everything worse (we are getting close to that point). If it gets too bad, I could wear a patch over one eye and just look through the other. Arrr 🏴‍☠️

Tim asked if I could get a pirate outfit to go with the patch 🤦‍♀️ 😂 🤪.

There are other options for future treatment, if things continue to get really bad. They can give me steroids, or if it gets really, really bad, they could do surgery. But, my vision would have to be stable for six months to get surgery, which is not likely to happen.

IF my eyes did stabilize for at least six months, surgery on the occipital nerves or muscles (not sure which) would have to be done by the pediatric surgeons at Texas Children Hospital. Yes, you read that right. Apparently pediatric surgeons are the only ones who do this type of surgery since it’s mostly kids who have this problem. I could get into that!

Tim said he always knew I was still a kid at heart 😂 🤪.

I don’t anticipate needing surgery any time soon. And neither do the doctors. They are just telling me things to look out for. Now they have my issues on record so I can be followed as needed.

The worse case scenario, if one wants to think about worse case scenarios, is if those post-radiation spots developed necrosis or edema or we had progression with more lesions. I think that would be really, really, really bad, but we don’t anticipate that happening either. Continued prayers 🙏🏻 in that vein are appreciated 🫶!

Dr. Al-Zibidi said if this problem was going to correct itself, they would have expected it to do so within 4-6 months post radiation. So that’s not likely to happen. It’s been 5 almost 6 years since I had mine, so the chance of spontaneous correction will be left up to God. We can still pray for a miracle! 🙏🏻🙏🏻

In the meantime, we will keep treating the symptoms (double vision, gait, head tilt, balance) unless there is a sudden and significant change, at which point we would start looking at other options. Dr. Al-Zibidi said she would like to see me back in 6-12 months to check their numbers and see if anything has changed, but she’s quite content for my regular optometrist to follow me, and doesn’t anticipate needing to see her on a regular basis. She complimented Dr. Boeckman, and said he is doing a good job. She’s pleased with his work (he also faxed over all my records so MD Anderson could review the history). That’s encouraging. I like going to him, and I have seen him for nearly 15 years now.

After my appointment I walked back to the hotel, picked up my car, and drove to Conroe where I stayed the night in a different hotel. A much better hotel, for less money, actually. It was raining, and my eyes were still dilated, so that was a fun drive 🥴🫤🙃. I picked up the mail, went by our storage shed, visited with my son and his family, and finished the trip with my infusion the next day before flying back to Idaho Falls.

Whew. That’s a lengthy blog. Sorry about that. But, I learned a lot, and hopefully you did too. Now I know what to look out for, and I know better how to pray. I also feel like I have answers that explain some of the things I’ve been experiencing, so it will help me to have a better handle on what my body. I feel confident that my body is just responding to history, rather than “new” cancer issues creeping up, and I believe what they shared with me to be true. This referral by my optometrist and my neurosurgeon was a good idea. I’m in good hands.

À la prochaine…hasta la próxima vez…until next time!

March 14, 2024

Echo, Chemo, and Docto…rs

Quick medical update on this week’s events.

I had my annual echocardiogram yesterday and saw my cardiologist. Everything looks good. Even my cholesterol is in the normal range. It’s a beautiful thing! She said I should exercise “150 minutes per week.” That could be 3 days for 50 minutes, or 5 days for 30 minutes, etc. We walk, but it could be a bit brisker for me and we probably need to be more consistent.

I wish I could say I was laying there taking a nap, but it’s impossible to sleep when the tech is jamming the wand into your ribs to get pictures of your heart. 🙄🥴😂 Fortunately I am only required to have this test annually now, and they no longer do contrast. So no pokes for blood, and a shorter time in the scan.

Today I gave blood for the second time in two days, then saw my medical oncologist. Tim went with me to that one “for quality control.” Dr. K. laughed and asked whose quality is he controlling, mine or his 😂😂🤪🤪. The doctor referred to me as “people like you” as we talked, meaning I’m off the charts in terms of lifespan with metastatic breast cancer. They don’t really know whether they are over-treating, and no one will ever do a study to determine that. As long as I am tolerating it, we are good to keep going. After this many years of treatment, he said it is easy for one to become complacent. He is always guarding against complacency, and I appreciate that.

Every time there is any little something that comes up, he sends me to see another specialist, just to be sure. First, the brain lesions are likely just increases in hot spots due to the radiated areas, but the specialists will determine that in April after my follow-up MRI. Second, I’ve had a little lung issue with spots showing up from time to time (coming and going), an ongoing cough, occasional shortness of breath and fatigue. My cardiologist said it doesn’t sound heart related. So, Dr. K. is sending me to a pulmonary specialist. No emergency. No rush. Just making sure he is covering all his bases. Third, I have had some headaches with an increase in double vision (not likely related to the brain spots). So, he wants me to see an opthalmologist. Not a bad idea; I was already considering it.

While I don’t look forward to adding more specialist visits to my list of providers, that’s what I love about my oncologist. He never assumes everything is just fine unless the specialists tell him so. He listens, and responds accordingly. It’s better to go see a specialist and discover nothing is wrong than to not go and allow it to escalate.

At this writing I’m getting my treatment (Herceptin and Perjeta), which I do every three weeks. That’s the last of my medical appointments for this week, and then we can play.

I’m wearing my Airstream shirt because we are hitching up the trailer right after this and leaving for a Bluebonnet Rally in Brenham. They got me in early today and I have a very efficient nurse, so that’s a double blessing! Looking forward to seeing some beautiful bluebonnets!

“Lord, You restored me to health and let me live.”

^{Isaiah 38:16b}

À la prochaine…hasta la próxima vez…until next time!

February 22, 2024February 23, 2024

Brain MRI update

It’s a bit daunting to have scans, only to be told I need to do it again in a few weeks. I was just getting used to having annual scans *sigh* 😔 . I’m not nervous or scared, mind you. Just annoyed that I have to take the time out of my busy retirement schedule to go back to the clinic (🤪😂🙄).

You may recall I had an MRI of the brain last year, as I do every year. It was in February (2023) and nothing was found. Well, I DO have a brain. They found one (contrary to some opinions 😂🤪), but there were no lesions noted. Still stable!

Shortly after my annual MRI in 2023, I had a routine vision exam. The exam showed a significant increase to my double vision, which was concerning to my eye doctor. He can’t add enough prism in my glasses to fully correct it, so my eyes fight to bring the objects together. I’ve had double vision for about 2+ years now. I can see perfectly clear; I am just doubly blessed with whatever I see 🤦‍♀️ . In some ways it’s easier to wear glasses all the time instead of always looking for my readers, so I don’t mind that too much.

I shared the vision issue with my oncologist and he repeated the MRI of the brain in April 2023. In those results, two very small lesions showed up. But, they didn’t see any cause for concern. These are in the exact same location as two of the lesions we had radiated with gamma knife back in January 2019. My oncologist said they likely showed up because of the way the MRI slices. I wrote a blog about that in May 2023 if you missed it.

My follow-up MRI for this year was done last week on Valentine’s Day, along with a follow-up CT of the chest (because of some new spots noted on the lungs in my last CT scan).

Before you read the following, please note that any hot spots in my brain are likely due to post-radiation effects. I think that means any lesions are just showing where my brain was radiated with the gamma knife, and therefore will keep showing up on the scans. There doesn’t seem to be anything to worry about, and they are still calling my body stable, but they do watch these hot spots closely in case there is progression of disease.

Bottom line, those little punctate lesions in my brain have grown since April of last year ever so slightly. Here’s the medical lingo from their impressions.

Irradiated Lesions: * Interval increase in size of an enhancing lesion within the right cerebellum status post radiation therapy which now measures 0.7 x 0.5 cm in axial dimensions (series 26 image 32), previously measuring 0.4 x 0.4 cm. Similar minimal associated T2 hyperintense signal without significant mass effect. * Interval slight increase in size of an enhancing lesion within the cerebellar vermis status post radiation which now measures 0.4 x 0.4 cm, previously 0.3 x 0.3 cm (series 26 image 36). Similar minimal associated T2 hyperintense signal without significant mass effect.
Comparison: MR brain with and without contrast dated 04/20/2023, MR brain with and without contrast dated 02/21/2023.
MRI Brain with and without Contrast
Collected on February 15, 2024 8:25 AM

(It was on the 14th, not the 15th.)

What does this mean now?

They still think these spots are most likely “post-radiation” effects, rather than disease. I have had several conversations with the radiation PA, who has also been in contact with my radiation oncologist (who did the gamma knife). They want me to follow up with another MRI in 6-8 weeks (scheduled for April 3). I can do that in The Woodlands.

After the scan, I will meet with my radiation oncologist on April 9th to discuss “treatment options.” I don’t like the sound of that, but I did ask a question about treatment if there is progression, so perhaps she is just responding to my question. I’m glad she is willing to do talk with me via telehealth, and I’m happy they have MRI in The Woodlands now. It’s so much better now that I don’t have to drive downtown.

I have been five years without any progression, and it’s not uncommon to have some spots show up when you have metastatic breast cancer. I’m not worried, and I think it’s going to be fine. Having said that, just in case there is something else going on we are praying for a miracle, e.g. these spots will all vanish in the next scan. Please join me in prayer for that miracle. Either way, we trust the Lord with whatever comes our way.

As for the CT of the chest, all the lesions they saw in the last scan are gone 😁 . I believe it was the cold I had at the time. They found some new spots, but are attributing it to “inflammatory,” meaning I have another cold. Surprise 🙄 🤦‍♀️. So that’s good news.

À la prochaine…hasta la próxima vez…until next time!

(I started studying Spanish as well as French, beginning in January of this year. I’ve been studying French on DuoLingo for more than four years now.)

December 12, 2019January 7, 2020

Seven Years Ago Today…

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!

April 17, 2019May 6, 2019

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…

December 21, 2018December 21, 2018

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.

February 12, 2018

Brain Mets

Today was a good day. I started off with Physical Therapy doing strength training after Breast Cancer. I have unlimited PT visits with my insurance, so I have been getting help on the lymphadema, scar tissue, and now I feel like I have my own Personal Trainer to help me get stronger. I felt a little queazy at one point of our workout, but my blood pressure was fine so we kept going. I was reminded of my 30s when I was going to a gym, working out, pressing my full body weight with my legs, and lifting 25 pound weights during body pump. Now in my fifties I could hear the Hefty commercial calling me, “wimpy, wimpy, wimpy,” as I looked at the 1 pound weights gripped in my hands…and hard work! We have a ways to go, but I’m determined to get stronger.

The main reason I’m writing is because I had a visit with my radiation oncologist this afternoon. I love her. She’s a great doctor, and very knowledgeable. She said the two very tiny spots the MRI found on my brain are only detectable on one set of slices, but not the other two (they have to triangulate to do any treatment). She also reassured that brain mets are very slow growing, unlike the aggressive tumors we’ve seen in other parts of my body. And since they are so tiny, she is not concerned. Due to the longevity of life in women with breast cancer (her words), they zap them as needed. It is likely I will have to go in and do this from time to time. The phrase “longevity of life” was music to my ears. I like thinking about living, and enjoying life.

Radiation to zap brain lesions (a/k/a brain mets, a/k/a/ brain metastasis) does not have any side effects. And for now, the tiny spots are not causing any symptoms either. Repeat the MRI in about 6 weeks, then see if we need to do anything else at that point.

She went over the possible treatment options for when/if the time arrives (I immediately turned down the Gamma Knife, which is downtown). Fortunately, I can be treated in The Woodlands (Yeah!). It only takes three trips to zap them, so it’s not nearly as big of an ordeal as when I got radiation on the surgical scar (I had 33 daily rounds, if you recall). There is also a possibility this is not even brain mets, and the spots may “disappear” by the time I get another scan. So, for that we are praying! I believe in miracles, and I’m thankful I have a doctor who does as well.

On another note, tomorrow I have an appointment with a dental oncologist–I didn’t know there was such a thing–as the bone scan showed some “inflammation” in the right TMJ. For this I do have to go downtown.

Otherwise, all my CT scans looked good. The liver, which you recall always had spots on every scan, is “unremarkable,” along with the spleen, pancreas, and my lungs also look great. I still have cancer in the bones, but it isn’t spreading. Everything is “stable.”

April 15, 2016May 7, 2016

Mom and Me

Karen D.

My Story

It was the summer of 2013 when my mom got the news that she had breast cancer. We were shocked and concerned since we had no known family history. She and Dad assured us that it was going to be okay; it was small, not aggressive, and could be removed. She had a lumpectomy and then started 21 days of radiation. We live eight hours apart, so we checked in often on the phone to see how she was doing. She was tired frequently, but came through smoothly.

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April 6, 2016May 8, 2016

Radiation Treatment

Anonymous

My Story

The one treatment I had feared the most was radiation. I pictured all kinds of negative images: a loud machine, a sterile cold room, rushed preoccupied staff, pain during the treatment, debilitating side effects during treatment that would hinder my ability to work and take care of my family, and long-term side effects.

Continue reading “Radiation Treatment”