Lucinda West – Page 14 – The Metastatic Breast Cancer Journey

August 17, 2021

Happy Birthday Bonnie

the metastatic breast cancer journey banner

Today is my big sister’s birthday. Shhh. Don’t tell anyone, but she is SIXTY years old today. How did we get to be so OLD? 🤪 Happy Birthday Bonnie! I’m getting treatment at MD Anderson today. This is her birthday present… live to see another day. She is in Ohio and we are in Texas. If we lived closer she might be here with me, laughing about memories of childhood. Or, I might take her to dinner.

I guess this blog will have to suffice.

One of my earliest memories in life starts with my sister Bonnie. I was about a year old. Our parents were entertaining company downstairs, and I was playing upstairs. According to the story I’ve been told, I got into my mother’s dressing gown, then tried to come downstairs in it. Tangled in the sea of material, I fell down the entire flight of stairs (that part I remember). I would have cried if it weren’t for my siblings.

It is interesting how certain images are so vivid in my mind. This memory is one of them. I can still see my sister Bonnie’s three-year old face peering around the corner of the stairs, a worried and inquisitive look on her brow, checking to see if I was alright. That look was comforting.

Then came my five-year old brother, racing in his little red fire truck making siren sounds, “rrrrRRRRRrrrr, Gotta take her to the hospital. Gotta take her to the hospital. rrrRRRRRrrr.” He made me smile, laugh even.

Two years were between each of us. Shawn was first, and then Bonnie, and I’m the third of three. The baby. The one who wanted to be into everything her big brother and sister were into, but instead got teased, pushed aside, sheltered, and treated like all babies in families tend to be handled (or was it just me? 🤔).

One exception was the time they invited me to watch a movie with them, and they introduced me to Carrie. Yeah, that’s the one 😳. I was still just a kid, but they were probably pre-teens or teen-agers by now. Thrilled to be invited, yet unaware their invitation was another method of torture. 😬😬

Siblings… 🙄🙄

Bonnie probably remembers their true motives. She remembers way more details from our childhood than I do. Maybe it’s chemo brain, or maybe I was just too young at the time it happened. Or, maybe I’ve tried to block that one out. Who knows 🤷‍♀️? (Shudder….)

I do recall our mother walking into the room and asking what we were watching. They probably gave her some lame story about a teenager who was growing up. Or something like that. I’m sure she and Dad would not have approved us to watch that movie if they knew what it contained. (I hate horror movies to this day. That particular one left a bitter tasting pill in my mouth.)

I remember when we were just little tykes running around in our PJs. We always shared a room growing up, and got to know each other pretty well. Yet our rivalry was a bit like The Queen and Princess Margaret (can you tell what series we are currently watching??). I’m pretty sure she was The Queen in our household. She was the one in charge. I got to play and be a kid, while she had to act more like a grown-up. It must have been a heavy crown to bear.

They also did due diligence as the older siblings to protect me. It was their job. If I got in trouble, they got it two or threefold. They may have felt it was their right as older siblings to torture me 🤪, but no one else better try! Bonnie may have been a bit mischievous as a kid, and even mores as a teen (I could tell you some interesting stories–I’ll spare her the embarrassing details 😂), but she looked out for me.

Having Bonnie in my life has given me many fond memories. I can’t imagine life without her. Happy birthday sweet sister!

I got my bloodwork done, put cream on the port, now I’m waiting to go back. Almost finished with this blog when they called my name.

Á la prochaine … until next time.

August 2, 2021

Scans are Still Good

Drinking peach tea flavored oral contrast for the CT is a delight.

Just got off the phone with MDAnderson. CT/Bone Scan look good. No progression. Scan still shows the metastasis in the lower spine (which is why my bones are degenerating and I have lower back pain), but nothing is progressing and there is no new growth. That’s the last of the scan results from July 28, 2021. Last week I heard the results of the brain MRI. My brain is also stable. No new lesions noted since January 2019. All is stable. ❤️

Praise the Lord!

Wash-rinse-repeat. Follow-up in 3 months for the CT/Bone Scan. Follow-up in 6 months on the MRI of the brain. Continue on the same line of treatment.

“Never stop praying.”
1 Thessalonians 5:17 CEV

Thank you all for your continued prayers. I know sometimes we may pray and just want to be finished praying, because it’s a long haul with cases like mine. We just want to hear “your prayers are answered,” and “treatment is finished.” We want to hear the bell ring. Your persistence is very much appreciated!

With Stage 4 metastatic breast cancer (or any terminal illness for that matter) each day, week, month, and year is a gift. I want you to know that your consistent and fervent prayers are what keeps me going. Physically, emotionally, mentally, and spiritually. I couldn’t go through this without the support of my sweet family and all the rest of you prayer warriors. God has indeed blessed my life.

Á la prochaine…until next time!

July 6, 2021July 7, 2021

Annual Squeeze and Chemo Day

Today I got my annual boob squeeze. Ladies, you know the one. It’s where you first prepare yourself by putting two bricks in the freezer, pressing your boob in between, and then s q u e e z i n g as hard as you can. Be sure to hold your breath! Or you can lay sideways on the driveway, right behind the rear tire of your car, then ask your hubby to back over your boob until it is thoroughly smashed. Yeah, that’s the one. The annual mammogram.

Fortunately, I only have the left one to squeeze, as the other one is my Frankinboob. (You’ll have to go way back through my history, a LONG way back to read that blog. 😂🤪😂)

MD Anderson has nice robes; I’ll give them that! They keep them in a warmer as well. I wanted to take one home with me. 😃 MyChart showed the results within thirty minutes. I think that’s a record! All clear. PTL!

Shortly after the mammogram, I had an interesting event at the lab. The bandage didn’t hold ‼️ I was reminded why I don’t typically wear white shirts to the hospital. 😳😳

🥀 As I was walking out to the lobby, the gauze sprung to the floor, and blood flowed swiftly down my arm, dripping onto my blue leather Michael Kors crossbody bag. Somehow, I managed to pick up the gauze, stop the flow of blood, and keep it off my shirt. It also easily wiped off the leather. Another patient jumped to my rescue, and called for help. The phlebotomist was very apologetic. We’ve had lots of conversations during blood draws over the years, so we had a good laugh while she was rewrapping my arm.

Our daughter needed a ride to run some errands, so I met her for lunch between mammogram and chemo. A bit tired, to be honest. They took me in early, then I napped for a while, waiting for the pharmacy to mix the bags.

I get this question a lot…”when will you be done with treatment?”

I’ve been stable for two years now, but they will continue to treat me. I have heard of women with my subtype of metastatic breast cancer going off treatment, after being stable for several years, and others who stay on it for life. My doctor doesn’t take any chances. He is concerned about the potential recurrence. They always see some small spots on my scans, so we don’t want to give them a chance to grow, if it is cancer they see. 🤷‍♀️ And if it does recur, it could come back like a vengeance. So… I’m in treatment for life.

I receive immunotherapy (Herceptin and Perjeta) via infusion every three weeks. It could be worse 🤷‍♀️. At least I get to keep my hair. ❤️ It’s all done in the chemo rooms, and they treat it like chemo, but it’s not actually chemo. Hence my hashtag, #chemonotchemo.

MD Anderson is starting to feel a bit more relaxed, like it used to be before the pandemic. Patients can take a visitor now, and the front lobby is no longer congested with people waiting for their corona screening. There is now one big screen at the entrance with the questions, to which you reply a simple “yes” or “no,” and you are on your way. I heard many comments of thankfulness that we’ve come this far…Breathe!

In all seriousness, if you haven’t had your boob squeezed by a mammography in a while…it’s time to call and schedule an appointment.

À la prochaine…until next time!

June 10, 2021June 11, 2021

Crazy Chemo Day

It’s another crazy chemo day! 😜🤪 My phone kept ringing off the hook (how’s that for an antiquated expression LOL). The nurse was trying to access my port and hook me up to the bags. So much for taking a nap😂😂🤪😜.

I was scheduled to get my normal doses of Perjeta and Herceptin today, which I get every three weeks. It’s also time for my Zometa, which I get every three month (for the bones). Nurse said the Zometa was not financially cleared, so she had to double-check, but then it was cleared. Since it wasn’t cleared when I did my labs they needed more blood to get a Vitamin D level, so she pulled it out of my port since it was already accessed. Insurance… 😬😬😬

Then…after all that…the Vitamin D machine in the lab was broken 🙀. So, Zometa was a no go.

I’ll get the Zometa next time. No big deal.

Honestly, I was a bit relieved. The timing is a little stressful today. Our daughter’s car was in the shop so I was helping her get it out. And the taillight is out on our new Mini Cooper, so I need to stop an have that checked.

I just realized I haven’t blogged about that yet. Surprise! We have a new Mini! It is great to have a second set of wheels for those times when we both need to go in opposite directions. We traded our only car for the truck last year, and we’ve been using one vehicle for quite a while now. We have the motorcycles, but the rain has been so unpredictable! This car was a decommissioned service loaner which they just made available the day we were there. It has 5,000 miles on it, but it is still titled as a brand new car and comes with the full warranty. So we saved some money on the deal.

In the meantime, I brought my children’s book and showed it to two of the nurses. They loved it! My primary nurse has an 18 month old, and she bought one for her! Venmo has become my newest friend. She was so excited when I offered to sign it for her as well. She said, “it’s not every day you meet the author of a book you own.” That made me feel good. ❤️

Now, on to dinner with our HOG Chapter, and after that I’m keeping our newest grandbaby overnight so Mom and Dad can get at least one night’s sleep. Like I said…crazy chemo day!

À la prochaine…until next time.

May 18, 2021

Still Stable

As I sit here waiting for chemo, I was thinking back over the events of the past couple of weeks. In the month of May we have experienced the joy of a new grand baby held in our arms (#5), time with two of our grands as they visited the dentist, a long ride on the Harley through the Ozarks, fun and many card games with friends, a trip to Dallas for maintenance repairs on the Airstream, an escape room with our friends who are moving to Florida, a nest full of baby Carolina wrens on our back porch to also make me smile (5 as well), Top Golf and dinners with friends from our Harley Chapter, my hubby’s new clean-shaven face, and the ever-present cancer scans.

CT and Bone Scans. Scans are usually a half-day occurrence. In spite of the seeming gravity of the situation, this has become a bit routine. Clear liquid fast for a few hours. Access port. Draw some blood. Drink the contrast tea. Inject the nuclear tracer for the bones. Wait a bit while drinking the tea. CT scan of chest, abdomen and pelvis (the contrast gives you a very warm feeling and makes you think you are going to wet yourself 😜). Go eat lunch and wait another hour or so for the tracer to get to the bones. Whole body bone scan (that contrast does not make you feel like you will wet yourself).

Wait for results. (I usually forget to look; it is that routine.)

Admittedly, I was a little nervous when I saw these results show up in MyChart last night. The bones are fine, with no progression. But the CT showed a couple of new lesions in the lung. They are very tiny (about 2 and 4 mm) but there nonetheless. I knew I would see the doctor today so I waited to ask. No need to panic and waste time worrying. I’ve learned that lesson the hard way. But it does make one pause and think for a moment.

What happens next? When progression occurs, there is often talk about different treatment protocols. Metastatic breast cancer is not curable but it is treatable, until there is no longer a treatment option available. Right now, I’m on the first line of treatment for triple positive breast cancer. I don’t want to change. I don’t like change. I’m perfectly happy with the status quo. I like this protocol just fine. I know what to expect, and my body tolerates it well. It’s only every three weeks. We are able to travel and enjoy life. Much life. I don’t really notice the effects of treatment. I could handle this for the rest of my life. If this one fails, we have to mark it off the list. I pray this one does not fail.

Before I went to sleep I asked the Lord for nothing to change.

My prayers were answered!
Do not be surprised when the Lord answers prayers. Expect it to happen!

My doctor is great. I can’t say enough positive things about him and his team. The nurses and physician assistant took time to talk to me, small talk as well as answer any questions I had. Long story short, they are not concerned with very small spots like the ones on this scan. They are too small to biopsy. Too small to tell whether they are even cancer. It could be residual effects from the lung infection I had a few weeks ago. No change in treatment. Continue as is, and follow-up with more scans in three months.

My oncologist recalled the first time I came in, nearly five years ago. I had a large mass on my ribcage. Mets were found multiple places throughout my body. He talked about how far we have come since then. He thinks I am a walking miracle, and no less. We chatted a bit more about kids and grandkids, and how easy it is to spoil them when we can send them home.

The question most prominent in my brain was the last to come out of my mouth. Does this mean I’m still stable? Yes! Your body is still stable. That’s what I wanted to hear‼️ ❤️❤️

I praise the LORD for answering my prayers and saving me.
Psalm 118:21

Thank you again prayer warriors, for all your continued prayers. I don’t think I could do this without you! Your prayers are answered every time I step foot here, and every step in between. My mind is at peace, and I know God is taking care of me. I may have a momentary blip in the radar from time to time that makes me ponder, but then I am reminded of God’s goodness, and of you who have me on your daily prayer list. Thank you for your continued perseverance! You encourage me with your constant support. It’s hard to keep at it for so long! Yet, you know this thing could turn any time, and you know that prayer is what keeps it from doing so, and thus you pray.

Thank you!

I started this blog with several memories. In just a couple of weeks we have experienced so much life. I can’t imagine my life being any less full than it already is! It is so full, I sometimes forget to write about it, until some cancer-related incident interrupts me. My body is still stable. I am living with cancer. More importantly…I am living.

Á la prochaine…until next time!

March 17, 2021

Pyogenic Granuloma Surgery

Pyoge…what?

Yeah, that’s exactly what I thought when my podiatrist told me. It’s a benign tumor of sorts, where blood vessels connect together and cause swelling as well as other problems. Women are more prone, and people on chemotherapy are also more prone to these issues.

Chemo…the culprit!

I have been struggling with my toes, toenails, and fingernails ever since I started receiving chemotherapy in 2013. I’ve already had surgery once to my left big toe to deal with severe ingrown toenails; but, I wasn’t actually expecting another surgical procedure.

I scheduled this appointment a few weeks ago, after waiting to see if they would get better. It never did. I won’t go into all the gross details because you can google it and see as many hideous pictures as your heart desires. Consider yourself forewarned!

Two toes bandaged in the picture were problematic. I couldn’t get the bleeding to stop on most occasions, or it would take a long time to stop. My toes are very swollen. The infection appeared to be taking over my left foot, and it was hurting to walk. So my primary doctor gave me an antibiotic (Reflex) last week. That was a good move, apparently, as these things can get out of hand very quickly.

I’m happy to say, it felt much better within a couple of days. The swelling in my foot went down and the pain went away. Praise God!

I need my feet, and my toes. I have enough trouble with balance as it is. I think I’ll keep them.

🤣🤪😜🤪😜😂

The surgery entailed numbing the toes, scraping out the tumor, and cauterizing the blood vessels. It’s all done in-office, and my appointment was over within an hour. I really like this podiatrist. He explains everything in detail, and has a good bedside manner as well. His staff are very friendly as well.

I learned something else today. Medicare covers a routine exam by the podiatrist every 10 weeks. Why? Because it helps prevent these kinds of things from happening. I will be on Medicate starting next year. At least, that is what I’m told since it will be 24 months since I was approved for SSDI.

Apparently, they learned from me too. I do love the fact I can still teach. I may not be teaching doctoral learners or counselors at the university as a faculty, but I am constantly educating people about metastatic breast cancer, stage 4, and what that means in terms of my treatment.

Public Service Announcement: If you have diabetes or neuropathy, you need to go more frequently to get your toenails clipped. Insurance covers this as well, because foot problems can result in very serious issues if left unchecked.

À la prochaine…Until next time…

March 16, 2021March 16, 2021

To Treat or Not to Treat?

You may recall my treatment was canceled in February because they could not get the preauthorization from insurance in time. (They eventually did get it a few days later; I was told by Cigna it’s good for a year.)

So, today is six weeks since my last treatment. This requires a reload, meaning double the dose and a lengthier infusion. Plus I’m getting Zometa today for the bones, so an even lengthier day in the chemo room.

That’s all well and good. Yay, I’m getting treatment…or not??

BUT THEN… I get a call this morning from Dr. K’s nurse and she said I need to have an echocardiogram before I can get treatment, “I’ve scheduled one for you today, downtown at 11:00.” What?? I can’t just drop everything and go downtown. (Have I told you how much I detest going downtown? 😤😤) I have to work up to that trip. In addition, we have meetings this morning and I couldn’t get there in time anyway, as well as get back in time for chemo.

Besides, I already have an echocardiogram scheduled for March 30th. My cardiologist said I’ve “graduated,” and he gave me six months before I needed another one. The last one was in September.

“Yes, but it was September 4th. It’s been more than six months.”

Wow…they are really pedantic about six months. To. The. DAY.

So this started a series of “what if” questions, a flurry of phone calls, self-talk, and stress over whether I would be able to get treatment today. This may not seem like a big deal. At least to me it didn’t. Just go ahead and treat! But apparently it is a big deal.

Then my oncologist (Dr. K) gets on the phone. “What if you just come in tomorrow?” he presses.

Does that really do anything for us? What if I don’t get the echo in time? What if my cardiologist doesn’t clear me for treatment? Why did they wait until the day of treatment to tell me this? Why didn’t they have the preauthorization last time, until after treatment?

If I don’t get it today, this disrupts our entire year of planning. We have identified the days I will have chemo, when we can travel, and when we will be at home. It’s not like I’m dying for crying out loud (or am I? 🙄).

I asked, “If I can’t get it today, can’t I just keep my echo appointment on March 30th and keep the chemo scheduled on April 6th?”

“Absolutely not. We don’t want to do that. We can’t wait that long.” There was an urgency in his voice. He continued with a discussion of the importance of this treatment, and how we should be careful not set any of our plans in stone. Always be prepared for something to come up, and be flexible with those treatment dates.

Try telling my hubby that 😔😔.

Dr. K. said he would try to get in touch with my cardiologist (Dr. I.) to see if it’s okay to go ahead with treatment today. He is concerned about my safety, and he wouldn’t want to jeopardize my heart. I was praying he could get in touch with him, because when I called my cardiologist they said he was not in today–probably doing some type of procedure.

Happily, Dr. K has Dr. I’s cell phone. Within an hour he was able to get a positive response. As long as I’m asymptomatic, continue to take my heart pills every day, and no swelling, Dr. I doesn’t see any reason I can’t get treatment today.

Whew! Crisis averted.

All kidding aside, I do appreciate my doctor’s diligence to keep me safe, as well as treat me for this awful disease. This did serve as a reminder that I’m not merely taking an aspirin each day. These are very heavy doses of immunotherapy (#chemonotchemo) that can be hard on the heart. So far I have been tolerating it well, but you never know what could happen in the long run. They have to be cautious. It’s also a reality check that without it, the cancer could rear its ugly head. We certainly don’t want that. 😳

At least I get a chemo room with a view. 😊

I’ve also come to the realization that I need to be my own case manager. When it’s almost time for a preauthorization, it will be in my calendar so I don’t miss another treatment. When it’s time for an echo, I’ll make sure my appointment is at least 6 months minus a couple of weeks, so we don’t echo this problem again. (See what I did there?)

À la prochaine…until next time!

March 9, 2021March 16, 2021

In the Hands of God

God is so good. We don’t talk about finances much because we were both raised with a strong work ethic. We are self-sufficient. We take care of us. We trust in God, but we also do what we know is the responsible thing to do…pay our bills.

But—suffice it to say—cancer treatment is expensive! On a reduced income it can get pretty tight at times.

The good news… I just received a phone call from MDAnderson. When I saw the name on caller ID I assumed it would be the typical recorded voice. You know the kind.

“Hello, this MDANDERSON, calling to remind …
Lucinda West…
about an upcoming appointment on…“

I imagine you probably get those same recordings from time to time.

Well, this time is was a real person. She was calling from the pharmaceutical financial services team, about my outstanding bill. I don’t usually get collection calls from them, but again I assumed they were calling to collect. Tim and I were just discussing the balance so I took a breath to explain our plan on monthly payments…

But that’s not why she called!

Instead, she told me of some other news. GOOD news. VERY GOOD news!

Apparently the drug company (Genetech) that makes Herceptin and Perjeta has assistance for co-payments. (I receive these infusions every three weeks.) She will send me an email, and after I apply it should be approved nearly immediately. This will take a huge dent out of the large out-of-pocket expense we have been burdened with every year. This is a new program apparently, and it may only work for this year, but we’ll take it!

I am so grateful we get it now, because this year is especially tight since I am no longer working. I will have to pay for COBRA starting in July. And, we are starting our new ministry.

Just before the call, we were discussing whether this is the right time to start the ministry. With the pandemic, and the economy, when is the best time? But God seems to keep saying YES! This is another confirmation of his omniscient and omnipresent provision.

God is so good. If ever you are questioning whether He will take care of you…don’t! Yes, we need to be responsible. Yes, we should pay our bills, and yes, work for food. But we should not worry about it.

The sixth chapter of Matthew gives us much food for thought about worry, as well as God’s provision. Take some time to read it. You might also take a mental break to watch and listen to this song. Ask Him to show you the areas where you have a hard time letting go. Trust Him. He WILL care for you! You are in the hands of the God who made everything.

Please leave a comment below if you found this helpful. Perhaps we can support each other in our ongoing dialogue as we learn how to release our fears and let God have total control.

À la prochaine…until next time!

February 23, 2021March 16, 2021

Canceled

No, I’m not talking about the current cancel culture, although that would be a lively blog I’m sure. I’m writing about my infusion, which was supposed to take place today.

We had some wicked snow storms in Texas last week. It is the worse I’ve ever seen it. We got several inches and built a snowman! The snow stayed on the ground all week. MD Anderson was closed the entire week.

I can only assume they have been a bit behind on paperwork. I was caught in the cracks as my yearly pre-authorization was up and needed to be renewed. They tried to get the pre-authorization from my insurance company, but could not get it in time for treatment. We are leaving on a trip, so we won’t be able to get it until March. Then we have to reload…

It is what it is. It will be six weeks between treatments, but I feel fine. So I am not worried.

À la prochaine … until next time.

January 12, 2021January 12, 2021

Chatty Chatty

While waiting in the lobby for my name to be called, a woman sat next to me at an appropriate social distance. I was waiting for chemo, and she was waiting for her labs to be drawn. She appeared to be in her late 60s or possibly 70s, sophisticated dress and very charming. She was chatting everyone up, including the tall man who chose to sit across from us. She assumed he played basketball, then they had a brief dialogue about his high school football career. He seemed relieved when his name was called, and she wondered how he got in before me. 🤷‍♀️ I wondered, too.

Since I was the closest, we had the longest of conversations. I now know her female related medical history, why she is here, who she is seeing, and how long she has been in chemo. We share a disdain for going downtown for scans or treatment, and a common interest in the chairs on which we sat. She also inquired as to how long it took for my hair to grow back. She was wearing a wig, which seemed to fit her personality. It didn’t look like one, but I know how to spot them.

Her cancer is different than mine, but I get it. She is relatively new into the process, so I get it. Cancer is hard no matter how it is diagnosed or what type you have. We can’t bring anyone with us to the center because of the pandemic, so it can get a little lonely at times. Again, I get it. For a social butterfly, which she obviously is, I imagine it gets a lot lonely up here. I am glad I could help her pass a few minutes of her wait time. And, it was entertaining for me as well.

My name was called first. We exchanged pleasantries, and off I went.

I lost count on my treatment number. I think it’s somewhere around the 60 mark. Today’s nurse is very efficient. He just informed me today is number 58, and we had a discussion about whether that includes the original treatment (it doesn’t). He stays active. I should be in and out before lunchtime. Tim drove me down here, as he often does, but he can’t come in the building. We communicate via text messaging while he works from our local café. I’m sure you know which one that is. 😉

Sometimes I nearly forget I have cancer. We have such a good life, and I feel healthy most of the time. I am still able to do the things I love, and spend time with the people I hold dear. (It’s hard to get up and down, and my body has more aches and pains, but that could also be attributed to old age 😂).

When I sit in the lobby, I am reminded. When I get hooked up, another reminder. When someone sits next to me and talks about losing her hair, again I remember. I will always be reminded, but those are momentary when I compare it to eternity. I am a survivor, and I am a thriver. I do not lose heart.

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”
2 Corinthians 4:16-18

Á la prochaine…until next time.