Lucinda West – Page 20 – The Metastatic Breast Cancer Journey

November 20, 2019

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.

October 30, 2019January 17, 2020

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.

September 20, 2019January 10, 2020

Road Trip!

Never let cancer get in the way of living life! We took our two oldest Granddaughters on a road trip to see Great Mama and some of their cousins in Arkansas. We took one from each of our kids, to give both families a break, and because they are the oldest. They play well together, so why not? LOL.

McDonald’s Fun. Paige likes to mimic her older cousin.

The oldest is potty-trained, and the second is not. After a major blow-out that involved taking the car seat through a nearby car wash and bathing in the McDonald’s bathroom sink, we decided not to do that ever again, until they are potty-trained, that is. Here are a few pictures from our fun time together. (These were later put into a book and given to them for Christmas.)

Á la prochaine…until next time.

August 21, 2019January 10, 2020

Home Sweet Home!

We moved in! We have watched this house go up from the moment they tossed the dirt. It’s exactly one-half mile from our other home, and one-half the size. We downsized to decrease our stress as well as the mortgage.

We thought we were going to travel in a fifth wheel for a while, and even bought the truck to pull it. But after a bunch of reality checks we determined we need a home base and are looking for another way to travel. For example, my flight home on one of our trips was cancelled due to inclement weather, and my treatment was also cancelled. This made us realize the importance of flexibility as well as having a home base near MD Anderson. So, we closed today and started the slow process of moving from the storage unit to our brand new “smart” home.

Alexa, turn off the lamp.

Á la prochaine…until next time.

August 14, 2019August 14, 2019

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.

May 26, 2019

Mad Hatter Hotel Hopping

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

May 26, 2019December 27, 2019

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)

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…

February 21, 2019

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.

January 25, 2019

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…