Scan Update

Well, it is over. I  made it through another scan. 

To recap: Three months ago I learned that a lymph node toward the front of my chest had enlarged to 1.9 cm--that is huge! Those guys are usually not even a centimeter in size  Also, there is some thickening of the pleura of my right lung that the radiologist deemed potentially metastatic spread. 

As I usually do, my brain went through the different scenarios preparing for what could be the worst or even the best results of this scan. I would think about what my oncologist would say. Would she begin with: how are you feeling--an indication the news was not good. Or, would she jump right in with the only information that mattered--an excellent start for what will most certainly be great news. Then I would play my mind's movie, what I would say and how I would say it. In the past, I have had some kind of plan. A plan I could throw at her hoping she catches it in order for me to stay on my current treatment. Luckily, in the past, she has caught it, agreed to it, and the plan worked. But, my research and the knowledge that I have already had so much radiation to my chest made me painfully aware this time I had no plan. My sense of control--so needed by all of us--was gone.

The knock came, my oncologist entered. She seemed at ease, a good sign. She sat down and began talking. "Well, your scans look good". 

I say, "What?" 

She looked at me like: what do you mean, what? 

That followed with the best conversation. A conversation I was so sure I was not going to have. 

She let me know that the lymph node had decreased. Could have been some kind of infection causing the increase but really all that mattered was its size. It wasn't super small, yet, but it was down from 1.9 to 1.5 cm. As for the pleural thickening, it was stable. She didn't seem that concerned about the thickening having not mentioned it to me two months ago. I learned of it by reading the radiologist's comments on my report. 

We moved away from the scan report as our conversation continued. I asked her whether I should get the COVID vaccine. She said, "Yes", without hesitation. 

My next scan was set and will be at the end of May just before school lets out for the summer. And, I get to continue my treatments with Kadcyla. The burden was lifted. and I smiled all the way to the infusion room. 

Thinking of spring and all of life's possibilities as I continue to find my way in the world after leaving my husband made for a tremendously happy ride home. If Kadcyla can continue doing the incredible task of keeping those little cancer cells in check, maybe I will be watching my youngest graduate from college in 2025. Hope is still winning!

The Results Are In!

Scan Day also became infusion day #34 of TDM-1!

What a relief to see a smiling face come through the door to tell me my scan looked great. I believed I startled Ms. P (PA) when I embraced her maybe a little too enthusiastically--I was joyful and couldn't contain it. 
 
My next scan will be in October. In the meantime I will travel to Kentucky to see my sisters, visit Cleveland, Ohio where my daughter will be working and watch my other daughter leave (again) for Japan where she will work over the next year. I am looking forward to a busy summer.     

Just Happy

The days leading up to the contrast I drink and the circular machine my body is sent through leave me with anxieties that would cause my body to explode if that were possible. I hate it. But it must be done. I want to know.

Scan day on Monday came with a treacherous drive to Chapel Hill. Two cars were flipped outside of Raleigh, and several more were sitting on the side of the interstate after hitting an icy spot in just the right way. The journey was slow. I called to make sure the hospital was taking patients. They were. I was told not to worry if I was late.

The travel to the hospital was worrisome. Worrisome because of the freezing rain, but also because this scan seemed different to me than others. Of course I am always scared, but this one came with such high hopes. A radiologist in September believed radiation could get the 13 mm nodule in my right lung under control allowing me to stay on my current treatment, TDM-1. It makes me feel far less sick than my previous ones, so losing it is a big deal. Others that follow will physically alter my quality of life in a bad way.

Cyber-Knife radiation ended in mid-November. During that time I did not receive any other treatment so my cancer cells were free to do what they will with no TDM-1 to smack them back. Soon I would know how my tiny tumor responded to the radiation and how any other mutated cells settled in my tissues were behaving.

Walking down that long hall to the place that would reveal good news or bad, I felt that sensation again. The one that makes me think: is this how it feels to walk to a place of execution? That is extreme I know, but my mind goes there. 

At 2:00 pm, Greg and I were sitting waiting for my Physician’s Assistant to give us the news.

Will her words leave me shaking violently as I continue walking on this tight rope of life? Staying balanced is hard.

The quiet knock on the door came. Bracing myself with a deep breath, I looked in that direction.

The door opens and the tiny person I am so familiar with these days appears. She has a smile on her face. Not just a smile but a big, genuine, every muscle used kind of smile. Her smile was directed at me.

I waited before saying anything hoping what I was seeing was not my mind playing tricks on me.

“It is good news!” she said.

“Yes!” I screamed, arms raising above my head, hands soon cradling my face incredulously.

How could it be possible that I was getting such good news?

For a few minutes the three of us celebrated. We looked at the scanned pictures. My lungs were clear. My body was clear. 

Then she says, “This is a preliminary read from the radiologist.”

My endorphin levels began to drop.

"There is a 1-2mm hypodensity in your liver. I don’t want you to worry about it. It is something we will take a look at in three months”.

Not worry?  

Uh, sure, okay . . . I don’t think that is going to happen.

That is one of the hard parts of cancer. There is always something to worry about. Whether it is white blood cell counts, platelet counts, the liver or the kidneys failing, or crappy little hypodensities that may not be cancer, but are scary nevertheless.

With this news from the best scan I have had in almost three years showing the fantastic result of Cyber-Knife radiation and what it can do to cancer, it might be expected that I would walk out of that hospital with no other thought than this is one of my best days ever! Of course, it is a great day. But, great days never seem to have that feeling of long-term elation that I imagine. It might be similar to how an Olympic gold medalist or of someone who wins the Super Bowl possibly feels. The person works so hard to accomplish a goal, but once they get there it is not as they expected. The reason? There are other feelings accompanying great events. Happiness of course, but fear, sadness, more pressure to perform, and guilt are all part of that package.

For me, such news doesn’t block out those emotions. Fear is never gone. Like the fear of a crappy little 1-2mm hypodensity—that may be nothing at all, but still. Guilt remains present because so many people have not had scans like mine. Then there is this one: the gut-twisting confusing feeling that comes after advancing to the next round of this game of Russian roulette. This game is tiring. Good results simply mean that in three months I have to play the game again. The tremendous anxiety, the fear of a bad result must be played-out all over again. Can’t it all just go away?

Emotions that negate happiness are made real especially when your PA says to you, “We know cancer is there. We just can’t see it.”

All my hopes of being cured—if that were somehow possible, but I keep hoping—were washed away by those words.

So, while people might think such wonderful news as this should leave me with a permanent smile on my face, my brain can’t let go of the other emotions--the guilt, the sadness, the fear--that wrap around me as I go from one scan to the next.

I am happy. Please don’t think I am not. It plays a bigger role than the others right now. But, it would be such a different world for me if I could be just plain, unadulterated happy without all the other emotions seeping in to take away what really is . . .

ONE OF MY BEST DAYS EVER!

Inevitable Change/Treatment #42, TDM-1 #25

Living is a continuous chain of events involving change. Luckily, change is not always one enormous chaotic event. Everyday changes can be subtle--a preferable condition don’t you think?  Unless you win a million dollars; that is another issue altogether.

Changes can be good or bad. My platelet changes continue to be not so good. Three weeks ago my platelet count was 106,000 per cubic millimeter. Before my recent blood-work, I figured my count would not be too low because I cut myself with scissors and after applying direct pressure, the bleeding stopped. They were down, though--86,000. Not the number I wanted to see, but a number that was acceptable to continue my treatment with ado-trastuzumab emtansine (Kadcyla/TDM-1).

I continue to do well physically after Cyber-Knife radiation to the one remaining tumor in my right lung. Occasionally I feel pain at the bottom of my artificial breast where the radiation was concentrated. The pain may be bone related rather than soft tissue; it is difficult for me to discern.

I saw my wonderful physician’s assistant during my regular infusion appointment. She was involved in the decision for my recent radiation. In my opinion, feeling cared for is probably the most significant part of the patient and medical professional relationship. She definitely meets this criteria by addressing even the smallest of my concerns, cancer related or not.

Back in September, I didn’t receive my scan report so I asked for a copy. Words like “worrisome” and “worsening” are difficult to read. Those words and similar ones from my past have left me trying to regain my balance on this tight-rope of life that I am walking. When I first was made aware of my cancer’s recent progression, I teetered. With radiation given the go-ahead instead of the head shake of “no” that I typically see and hear after my suggested treatment ideas, I recovered. Now, with radiation behind me, I continue to cling to the words my radiation oncologist spoke at our first meeting. His words gave me hope that the opacities seen on the scan are not suspicious for new metastases. I take comfort in believing the radiation continues to change the 13 mm nodule in my right middle lobe into a harmless group of dead cells allowing me to walk balanced and steady on that rope.

February will bring news of what is happening inside my body. My future will again be told. This is the life I lead. Every three months or more, I get a glimpse into my immediate future. The changes may not be noticeable, might be subtle, or might be chaotic. We all experience change, but a cancer patient is constantly reminded that change is happening.

This happened in  August--thank you, Toyota! 
I feel like I have lived in my van for the last 10 years. 
We bought this van just before my first diagnosis with breast cancer.

I am grateful for modern medicine and the people behind the scenes that continue to give me an excellent quality of life. Because of it, I have been able to drive hundreds of miles on North Carolina roadways bringing my children home from college for the holidays. I feel lucky that I can think ahead 6 months and allow myself to imagine witnessing my two oldest daughters graduating in May. Once they graduate, change will once again greet me as my twin daughters make decisions about where in this world they will live and work. 

Yikes! That is a long way away.

Last week we learned my second-born-twin daughter, before she settles into a new job, will experience new sights and sounds with her first airplane ride—that she remembers—and her first travel outside of the USA. After months of preparing, she submitted an essay, an itinerary of cities to visit and cultural events to see all done to win a $9,000 travel-abroad scholarship through the university she attends. A selection committee of 7 interviewed her and made the decision to offer her the opportunity to spend three months in Japan this summer.  We went to the post office a few days ago where she applied for a passport—something I have never done. My academically driven daughter gave up many social pursuits to have a chance for this experience. Her hard work has not always opened doors for her, but because she continues to work hard despite disappointments, she found a door that opened, and she was welcomed through it. (Sort of reminds me of my continuous pursuit of treatment options not considered by my doctor. My recent suggestion, radiation, was one of those options she had not considered.) My daughter’s award brings new excitement and fear within me—Japan is 14 hours away by plane, approximately 7,000 miles from home. If she needs me, I can’t jump in my van and be there in hours. My precious baby’s face that I continue to see from 21 years ago, is no longer a baby. I will put her on an airplane and while she is gone, I will have trouble falling asleep, but I know it is a trip she must take. She will return changed; I will be changed as well. When I gave birth to all of my children, I didn’t consider how profoundly the letting go part of parenting would affect me. It is hard and necessary.

Some change is difficult; some change is not. Some is quick; some is slow. I continue to hope for slow gradual changes in my life. That kind is best. Like a child growing-up, it may feel like it happened over-night, but it didn’t—it was slow and steady.

Flipping for Fifty-One

In 1984, I was a cheerleader for the University of NC at Charlotte. That is me in the picture on the right. I loved to flip and perform. I can't flip like I did all those years ago, but I can still remember how it felt; it was awesome. Today I am flipping in my head because I turned 51 years old! Two and 1/2 years ago I didn't think I would make it to 51, but here I am.

Rain fell from the sky, but I didn't care. It was a good day anyway. My daughter and I stayed indoors. We home-schooled, played with her parakeets, and enjoyed our time together.

On the 18th--Wednesday--I finished radiation. I have had occasional pain where the radiation was concentrated at the bottom of my right artificial breast. Overall, radiation was very easy with little to no side-effects--at least so far. On Monday, I will start TDM-1 again. That will be my 41st treatment for stage IV disease and the 24th with TDM-1.

A scan will be done in February. Of course I worry about the length of time I was not treated systemically while having radiation. Despite the worry, I will continue to feel happiness that I get to continue treatment with TDM-1.

 

The Other "C" Word- an update

This was me on Monday.

Sh*t. No that doesn't make me feel better.

F*ck. That one isn't releasing the anger I feel inside either.

Is there a curse word anywhere that can express how I feel?

NO, NO, NO!!

Monday, I saw my scan. One mutinous 13 millimeter spot in the middle lobe of my right lung glowered at me. It gave proof to everyone in the room that my cancer was growing, no longer responding to TDM-1. 

The image is not mine, but you get the idea.

But . . .

I had done my research.

"Could radiation be targeted at that one spot to push it back giving me more time on my current treatment since it is working everywhere else in my body?" I asked.

I knew the options left for me were far from being side-effect free. If I could avoid them, that is what I wanted.

My oncologist opened her eyes wider. "Stereotactic Radiotherapy. Yes, a possibility."

Hope was in the air.

This was me on Wednesday.

Walking out of the cancer hospital, the plastic bag I carried ripped exposing all I carried in it. My water bottle, soda, and sweater scattered on the concrete walkway. I picked it up and moved away toward the building's side in order to reorganize my belongings. As I knelt placing each item in a different bag my body shook, my hands reached upward and cupped my eyes. Exploding through my brain were thoughts of the words I had heard no longer than 10 minutes before. 

"I think there is a potential for a CURE."

WHAT?

I knew the statistics. I knew what I had been told and read about concerning people like me with stage IV breast cancer.

I said to the radiation oncologist, "Please don't say that to me".

He said, "I am not bull-shitting you. (Really--his real words!) I am positive and also a realist. I think this is possible. You have responded so well to treatment and are showing only one tumor. I say we essentially cut it out with radiation without actually cutting and continue treating you with TDM-1."

That is the plan I was hoping for.  (And, he said my oncologist was brilliant. I guess he didn't know the idea was mine.)

This guy was everything I could ever ask for in a doctor--energetic, positive, wanting to treat aggressively, willing to take chances when the opportunity to make a profound difference in someone's life presents itself. The description of a doctor's role to "comfort always, treat often, and cure sometimes" was being applied to me in every way.

I stood up, glanced around to find two women staring at me, checking to see if I needed help. Catching their eyes, I smiled and uttered, "I'm all right." I suspected they knew what I might be feeling, after all they were sitting outside a cancer hospital.

I found my car, unlocked it and sat in the driver's seat. My neurons were firing off through to the end of my fingers. I had to message my family. I wanted to tell the world what had happened. Someone is trying to save me.

While I waited for my heart to slow down and my senses to bring me back to reality, I confirmed to myself--I am a realist. Despite what he said, I knew this could all fall to pieces. But at this moment I want to believe what he said is true. For now, I am holding onto his words. The words I have been longing for.

The other "C" word, "cure", is the most beautiful word in the English language even if it only means living long enough to die of something else besides cancer.

Details to come. 

The Oldest Person that Ever Lived/Possible Progression

When I was a young girl, I thought I would live to be the oldest person that ever lived. The thought left a smile on my face; it made me feel special.

Me in 1974. Nine Years Old

In June, Dr. R. and I reviewed my scans. She gave me a copy of the report completed by a radiologist in Wilmington where my scans were done. I searched for the words “no evidence of active metastatic disease”. This time, those words were not typed on any of the white pages that contained the radiologist’s findings.  My oncologist, who doesn’t get too excited about anything really, never did give much attention to those words that meant so much to me.

On Monday, August 17, I met with my oncologist again. During our last discussion she said she would ask her in-house radiologist to interpret my scans. Today, I would learn those conclusions.

As Dr. R. walked into the room she said, “Your platelets are 90,000.”

I threw my arms into the air above my head and did a little happy dance.

With cancer, any good news is great news. My platelet counts are slowly recovering from the onslaught of full-dose TDM-1. Reducing the dose has worked!

But . . .

That doesn’t change what might be happening with my cancer.

My local radiologist’s report stated there is a “7 mm right middle lobe nodule . . . present in this area since 10/15/2014 at that time it measured 3mm.” The report I received in October said nothing about the presence of this or any other nodules.

Suspicions confirmed, not all is revealed to the patient.

After washing her hands, Dr. R. sat down on a swivel stool. She asked how I was doing then answered a few of my questions. Soon, she turned to the computer on the desk to her right. Her fingers moved quickly across the keyboard until she found the report made by one of the radiologists that is part of her team. She quietly read the conclusions eventually turning to me to explain what she had read. This new report stated there is a nodule that was previously 4 mm in the middle lobe of the right lung now measuring 8mm. She continued to explain that there had been three suspicious nodules in the middle lobe of my right lung which were being followed with each new scan. One no longer was picked up on the scan (disappeared), one was calcified indicating scarring from a possible illness I had had in my life, and the nodule prompting questions may have changed with an increase of 4mm. Dr. R. was not able to say if this meant progression or if it was absolutely cancer or not.

That stupid nodule may have doubled in size! She was not sure if it was cancer! Let’s be honest. What else could it be?  Okay, it could be scarring. But, scarring doesn’t increase in size plus there are no calcified areas to indicate scarring. Yes, I understand CAT scans have their limitations and may reveal something different on each scan. So here I sit today, writing, trying to organize my thoughts in order to help me not be so terrified.

I tell myself what I tell my youngest when she is scared.

“I am not dying today. I am not dying tomorrow.”

It seems to make her feel better. For me, it just doesn’t have the same effect.

Dr. R. said no one can say exactly what it is right now. Sometimes progression is not definitive until after several scans.

She said the nodule is too small, and it would be too dangerous to get tissue from it for a biopsy. As I and many others have stated, cancer is so much more complicated than news reports disclose to the public. If my fears become reality and this is progression, it is because that particular 8 mm piece of death has evolved into a killing machine that has cells that are no longer responding to my current drug.

Inside every cancerous tumor there are cells that are constantly evolving. Each cell does not look exactly identical to its parent cell. The complexities are endless so don’t believe the simplistic notion that a cure for cancer is going to happen soon—possibly for a few types, but the majority will not be cured so easily. Plus, think about how many cells must be destroyed before a person is freed from this disease. Elaine Shattner, a doctor I follow on twitter, tweeted (or may have retweeted) “There are about 1 billion cells in a 1 cm tumor. . .” Although some of the cells may no longer be living or are dormant--which is a major problem--within each tumor, there are so many of these tiny monsters that need to be destroyed which adds to the difficulties in curing cancer.

Modern diagnostics show details far greater than in our past, but medically educated people still cannot tell exactly what everything is from a scan alone. Much of medicine is “wait and see”.

So, I figured out that although my reports over the last year contained no description of nodules in my right lung, there were in fact at least three that were being followed. Those have remained unchanged over the course of my treatment until now. I am guessing since those nodules were not changing, they were not included in any of my reports. The report for my oncologist probably did. 

For now, I must wait for my next scan in September to reveal any additional changes in the nodule before my doctor along with a radiologist will decide if this is progression or not.

“Try not to worry”. Yeah . . . right.

That day in June when I left the land of no evidence of disease, I am afraid that my time with TDM-1 (Kadcyla) is nearing the end. My mind is preoccupied with it. I feel panicked that I won't have enough time to finish all that I need to do.

I wish I could think like that silly little girl I used to be. Far removed from the idea that she would someday be destroyed by cancer.

I will not be the oldest person that ever lived.

Damn.