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.

Up-Date on Platelets and Infusion #22 of Kadcyla/TDM-1

http://druginserts.com/lib/rx/meds/kadcyla/page/4/ 

 

Two weeks ago was a very good day for me. My platelets were 88,000/mmᶾ of blood which means they had improved enough for me to be treated. The dose remained reduced in hopes that my platelets will remain above 75,000.

The nurse practitioner and I discussed my current treatment plan with regard to my drop in platelets. She decided that I was being treated rather conservatively and according to the drug’s package insert I could be treated even when my platelets are close to 50,000/mmᶾ. So, 50,000 is my new targeted number. I will be back on my every three week schedule as long as my platelets don't dip below this number.

Though I did not verbalize the question, my NP answered a question that has been sitting in my brain for a while. “If TDM-1/Kadcyla is a targeted therapy then why are my platelets affected?” Kadcyla is ado-trastuzumab emtansine. Trastuzumab is Herceptin. It targets the Her 2 neu protein on the outside of my tumor cells. Emtansine or DM1 is a powerful chemical attached to the Herceptin molecule.  As Herceptin reaches those cells with excess Her 2 neu proteins it attaches to those proteins and eventually deposits the DM1 drug inside the cell. The DM1 then targets another protein, tubulin, causing the cell to die. Sometimes some of this drug breaks free before it reaches the cell and travels throughout the body hence the reason I am having one of the more common side-effects--low platelets. Some Herceptin never reaches its destination either causing side-effects of its own. go to link -- How Kadcyla works

 

TDM-1 also has a longer half-life than other drugs so it stays in the body longer.

"A drug's half-life is the amount of time it takes for a drug to lose half of its strength in blood plasma. This is most easily measured in medications administered through an injection or IV drip."
Explanation of half-life link. 

It was a relief to be treated again. I felt like I was no longer swimming in the ocean without a safety net while sharks circled me, waiting.