Two months of wondering if the lymphadenopathy reported by the radiologist in April was due to some kind of infection (my trying to reason that this was not progression), I have learned—again—that CT scans are never 100% accurate. The multiple x-rays are put back together to form an image that can be slightly different with each scan. This follow-up scan proves that statement. I will feel much better about the most recent radiologist’s impression if that same impression is reported by the professional reviewing my next scan in September. For now, I am moving forward with my life. Happy doesn't touch how I am feeling about remaining on my current treatment of Kadcyla (TDM-1). Just had treatment #87!!
Here are the impressions of the radiologists reading my scans:
April 15th 2019 Right paratracheal node measures 1.4 x 2.3 cm on 4:21 versus 1.2 x 1.9 p.m. on the prior. *Increase is determined by the shortest axis which is the first measurement.
Impression--Progressive nodal metastasis as evidenced by increased high mediastinal adenopathy—increased size of lymphnode.
June 17th 2019 Undefined nodal tissue throughout superior mediastinum with largest measuring 1.5 cm in short axis (rt paratracheal station) similar to prior examination. (short axis difference of 1mm on this scan) Was 1.4 x 2.3 cm on 4-15-2019.
Impression: No definite progression of disease.
Yeah, not seeing "No Evidence of Active Disease (NEAD)" or "No Evidence of Disease (NED)" jumping out at me any longer on my reports is deflating, but "No Definite Progression of Disease (Stable)" is tremendously wonderful in the world of metastatic disease especially when compared to "Progressive Nodal Metastasis". I will take it!
Dreams: they are the things you think about and hope for when you believe you have a long future ahead of you. Some you plan and then work for; some just fall into your life with no effort at all; some you keep wishing for because why not, you might live to be 100!
Then a random event happens to you that takes all the thinking, planning, working, serendipity, and wishing that you did and dumps it all in a pile forcing you to watch it melt away with every tear you cry.
Then another unexpected event happens. One that brings you out into the sunshine again. You start to breathe and take in all the freshness that a spring day can give. Some may call it divine intervention. I call it luck. Whatever it is, your world opens up and you start to dream again.
I had dreams that ceased in April of 2013. Then, those dreams sprang to life again when my living was not halted as quickly as I expected. I began planning to see my youngest graduate from high school and began believing that seeing her graduate from college might be possible too. I planted daffodils expecting to see their beauty at winters end. I thought about the trips I would take to see my older children as their adult lives took root with the partners they have chosen. Working full-time wasn’t a thought any longer. It became a reality! I made plans--not the I gotta get it done before I die kind of plans. The happy kind of plans that only futures can offer. I began thinking in terms of years instead of months, or weeks, or days.
For 4 years after the first 2 progressions, my oncologist walked into the room after each scan telling me, “Your scans look great.” We didn’t talk about what could be done next. We talked about the side-effects I was experiencing from Kadcyla and what could be done to ease them. Each wonderful and unexpected scan report brought such jubilation.
My hugely important scan day approached hopefully marking 4 years of no progression. It had been many months since x-rays were shot at me from many different angles putting together the picture that defined my dreams. Though thoughts that my good luck might be ending existed, I tried to see beyond those and see only the ones where I continue celebrating. My oncologist for so long did not seem to believe that my living 6 years with stage IV breast cancer was possible. She eventually began cheering me on saying, “We don’t see many people on Kadcyla as long as you.” I've been on it for 5 years, 83 treatments in all.
The familiar knock on the door came. She walks in and says, “Your scans look good. But . . .”
I stared at her bracing myself for her next words.
“Five lymph nodes look to have each increased about 3mm,” she says. “There are four on the right along your trachea and one underneath your arm.”
Every plan, every hope, every wish vanished. The Dream Crusher has reappeared.
“I,” she says, “am not convinced this is progression.”
Was she offering hope? Did she truly believe the words she spoke?
The rest is blurred by my thoughts reminding me my good luck would end, someday, this day.
I heard her say something about the nature of how CT scans work, and the possibility I could have a virus or bacteria causing those lymph nodes to enlarge as they work to kill the tiny invaders.
She said, “Let’s scan again in eight or nine weeks.”
“OK,” I said.
I want to believe the CT scan has it wrong about the five lymph nodes showing progression, and that my body is fighting some infection. Five lymph nodes enlarging, though, is no small number in the world of metastatic disease. I remember—oh too well—a scan in 2014 that showed a small increase in size of a few lung nodules. I left the treatment center that day not worrying about it. I don’t remember discussing progression. Taxotere was dropped from my treatment plan because I was tired of the side-effects. Herceptin and Perjeta were given every three weeks for another three months. I thought since she, my oncologist, allowed Taxotere to be dropped, it could mean nothing but good news. Looking back, I think she knew my cancer had found a way to out-smart the drugs. One more scan would be the truth teller. It didn’t matter which drugs I took at that last treatment. This feels hauntingly similar.
Sadness has again entered my world. What a crappy way to spend my spring break from school.
Just before Christmas, I began working as an assistant for three 2nd grade teachers in a low performing public school. Not only do I pull small groups of students to work on reading and math deficits, I work as a substitute teacher throughout the school when no substitute can be found to cover a teacher's classroom in their absence. Needless to say, I am busy all day long. I love helping these kids, and since I learned several months ago that my certification to teach could be reinstated, I think about someday having my own classroom. This would be exciting, but at the same time probably would not be a great idea with my condition being so unpredictable. As it stands currently, weekends are what help me recover from working full-time hours. Teaching would require far more hours than my current 40 and weekends would not be for sleeping.
Yesterday, I had treatment #82 of Kadcyla! I find this amazing and unbelievable. Plus my platelets registered at 119,000--normal is between 150,000 and 440,000. Three weeks ago they were 117,000 which was the largest number seen since March of 2015. Usually they have been anywhere from 70,000 to 90,000 because of Kadcyla. My other blood work numbers have some highs and lows but nothing too far away from the normal range. Great news all around.
April 15 is scan day. I haven't been scanned in a while. Oncologists become more willing to allow for a longer time to lapse between scans when cancer is stable. It has been a year on April 22 since my abdomen has been scanned and 7 months since my lungs have been scanned. If this scan is clear, I am sure you can imagine how happy I will be. My oncologist promised a discussion about extending my treatments to every 4 weeks! That might help lessen this horrible tiredness I have been experiencing. April 1st is 6 years of living with this disease. I would love another 6.
Though it is not what I had hoped, Kim Vogler Harris left this world without telling me goodbye.
We were cheerleaders together in high school. Though we were close friends for only a short whirlwind of time in our lives, there was a bond formed between us that would always be special to me long after we went our separate ways.
Those years of high school that brought us together were spent practicing cheerleading routines afterschool, preparing the banner for the football players to run through at the start of each home game, performing at pep-rallies and cheering at the games for our school’s football and basketball teams, and of course there were the weekends. Friday nights we might go to Pizza Hut after a game. Eventually an arcade opened up close-by and we would go to people watch or put some coins into a machine to find out what all the hype was surrounding a game called Pac Man. On Saturdays we might go roller skating or walk around the mall with other friends looking at clothes and oohing and aahing at the cute puppies showcased in the pet shop. Once we had our ears pierced while at that mall—mine for the second time, hers done for a third time. Keeping our eyes peeled for cute boys was ongoing though we didn’t actually talk to very many. And why was a bottle of Boones Farm wine necessary on more than one occasion? Honestly, I have no good explanation for that. Sure it was cheap, but it wasn’t very good. We thought we were so grown-up.
After graduation, we did what a lot of people from our small town did—went to Myrtle Beach, SC for a week of fun in the sun. Those were the days when we didn’t care about protecting our skin. Our skin soaked in the sun’s rays, glistening from that layer of baby oil we had covered ourselves in. That week of freedom and relaxation seemed like the perfect vacation. It was until the unfortunate incident of a boy who Kim had been dating decided to split his time with her and another girl from our high school—yeah, it got ugly.
While I was lost in the land of “I don’t know what career to pursue”, she knew what she would become. She didn’t miss a beat completing her education and becoming a nurse. Seems like only a short time ago—although it really wasn’t—she let me know she was retiring from that 33 year career. It was time to enjoy life, though the decision was forced on her. Ovarian cancer had reared its ugliness upon her life. She, like me, had entered the final chapter of her life.
After my 3rd semester of academic performance failure in college, my parents refused to continue supporting the social-fest I was enjoying. I moved home and Kim and I reconnected getting together on weekends when we could. Soon I had saved enough money, working the breakfast shift at McDonalds and the lunch shift at a restaurant called Annabelle’s, to buy my first car. Kim was there for that $8,000 purchase; sat right next to me in the passenger seat of that 1985 red Ford Mustang with cloth seats that my dad was sure was the perfect car for me. I had dreamed of a Honda Prelude with the fancy digital speedometer read-out, but that would have been a financially bad move so that Ford Mustang became mine.
I soon moved back to the college city I had left to figure out what was next in my life. Kim and I stayed in touch but not as often as we once had. She stopped by once to see me after attending a Bryan Adams concert. The next time we crossed paths was not under such happy circumstances for me. My dad was ill and in the emergency room of the hospital where she worked. We stepped away from the chaos happening around my dad while the doctors evaluated his situation. He had been diagnosed with lung cancer recently, but this particular visit was for a bleeding stomach ulcer. We quickly caught up on our lives and she offered hope to me regarding his condition. Soon I returned to my dad, and she returned to her work.
Kim, Mistie, Me
It was slow, but eventually I entered the Facebook phenomenon. There we connected again. Four years ago or so, posts let me know she had been diagnosed with ovarian cancer. The prognosis was good until it wasn’t. In 2016, I asked her if she would meet me and another close high school friend, Mistie. That same night we would have dinner with a small group of other 1983 graduates of Davie High School. At first she wasn’t sure she would meet us, but after some thought decided to join our small reunion. I am so glad she did. We had a wonderful time sharing the direction all of our lives had taken since leaving the world of high school and our youth behind. It would be the last time I would see her in person.
October 2018 was a horrible month for her physically. Doctors suspected a rare side-effect from one of her chemotherapy drugs had caused her severe diarrhea. She was hospitalized for dehydration along with kidney function decline. A month later she improved enough to go home but wasn’t completely recovered. On Facebook, she posted the picture you see here hoping the three of us could get together again. I thought for sure she had seen the recent plans for another class of 1983 reunion. She had not. Much of what had happened to her and all events in the world had been missed while she was in the hospital. I asked if she would be coming to the reunion telling her I would gladly push her around in a wheel chair if needed. She declined, still recovering and too weak to be able to enjoy herself. I asked if my stopping by to see her was possible, but she declined that too. Physically and mentally, I am sure she wasn’t ready.
Kim again entered the hospital a few weeks later for a blocked intestine. I thought for sure once the blockage was removed, she would recover, and I would see her at some point in the future. Not too long after that her youngest sister reached out to me to let me know several procedures were done which confirmed her ovarian cancer had spread to the lining of her intestines causing a nutritional decline. She was starving to death. Hospice Home Care was beginning the next day.
On January 12th Kim Vogler Harris died. Her cancer was slow and quiet in the beginning, vicious in the end. Her mother, 2 sisters, one brother, now 20 year-old daughter, husband, and others are now left to live their lives without her.
Though I wish she had talked to me like she did a few times over the course of her treatment--telling me that she was starting a new drug or that her daughter was starting college—she didn’t. I can only guess at the reasons.
People must do what is best for them and their families when an illness is robbing them of their life and happiness. I respect her decision; it wasn’t mine to make. She died her way; quietly to the rest of the world while maintaining a brave face as she said goodbye to her then 19 year-old daughter, and to the people that loved her.
Thursday, in Freeport Texas, a six year old girl was sworn in as an Honorary Police Officer by Police Chief Ray Garivey. The Freeport Police Department shared the story on its Facebook page. News organizations began reporting on the story as well. I caught the momentum of it on Friday.
While many people found this story heartwarming, I found the story troubling. Though I know the people involved had only good intentions, the words she was asked to repeat during the ceremony were ill chosen.
You see, Abigail Rose Arias has advanced cancer of the kidneys (Wilms’ Tumor also known as nephroblastoma.) It has metastasized to her lungs. There are no more treatments that could potentially stop its progression. She is dying.
The story has a “make a wish” charm with a young girl telling the Police Chief during their first meeting in December that she wanted to be a police officer. That prompted the chief to to make her dream happen. He and his department put together a police officer’s swearing-in ceremony with all the trimmings: a custom-fitted uniform and the eating of the stereotypical policeman’s favorite treat, a donut.
The highlight of the event happened, with her right-hand raised, as an emotional chief asked her to repeat the words he read to her. I could feel how the knowledge that this little girl’s life would end far too soon affected him, but I failed to see the words she obligatorily spoke as appropriate for this young girl’s circumstances.
"I now, and forever, promise, to keep fighting the bad guys, until all of my cancer is gone."
I glanced at the television in disbelief saying out loud, “Did he really just ask her say that? Now that little girl is going to feel like it is her fault that her mommy and daddy are sad. In the end, she may even think she didn’t fight hard enough.”
It is nice there was a special day created especially for her, but the words chosen by the adult(s) should have been chosen more carefully. Telling someone, especially a 6 year old child, that they can beat cancer is unwittingly cruel wrapped in a promise that if a person just fights hard enough, they can beat cancer. Saying such words to a terminally ill victim that has no other treatments available to them might make the person feel like they have power over cancer and give them a renewed energy to press on, but we who have terminal cancer know it is a lie. Cancer cannot be wished away or fought away no matter how determined that someone is to stay alive.
This story will not have a happy ending. Another beautiful person will die too soon.
For the most part I was able to forget that cancer is part of my life during this 2018 holiday season. Unfortunately, I still had to go to infusion on December 22rd, so I could not NOT think about it on that day. As I sat in “the chair”, I listened to a podcast and decided then I would share it here.
Untruths bandied about in our society capturing the attention of intelligent or educated individuals bother me. One particular cringe-worthy statement in the cancer community is “Sugar Feeds Cancer”. These three words are truthful, but someone thinking that giving up sodas and sugar in your coffee will stop cancer is a failure to understand basic cellular and food science. Giving up all sugar is nutritionally inadvisable.
Here is where I hand-off the science behind sugar and our bodies to Julie Langford, thecancerdietitian, who is educated in the field of nutrition. One step of her education landed her at UNC-CH where I receive treatment. I was surprised to learn she now lives in a city in North Carolina close to where I grew up. I think you will find her podcast about sugar and cancer easy to understand and wonderfully educational. She is dedicated to dispelling the myths in our culture concerning nutrition. I am a fan.
Before I leave you, I want you to keep these things in mind: 1. All cells need fuel, healthy and abnormal. 2. Insulin from our pancreas opens the door for glucose to enter a cell. 3. Glucose (sugar) is fuel for our cells. Sugar comes in different forms. Simple sugars are: glucose, dextrose, galactose, sucrose (in the body as fructose and glucose). More complex include: fructose, maltose, lactose. 4. Carbohydrates are made of simple and complex sugars along with starches and fiber. Some carbohydrates have nutrients (fruits, veggies, grains); plain sugar—a simple carbohydrate—does not. 5. Our cells cannot pick and chose which sugars to use. 6. If you eliminate glucose, the body will have to work extra hard to make the glucose that it needs to function. If no glucose, the body will break down proteins from muscle. 7. Proteins are made of amino acids. Amino acids can be broken down into glucose for use by the body when necessary. 8. If a person does not get enough nutrients, the immune system will be compromised and cannot protect the body from bad bacteria and viruses.
If it were not for the help of modern medicine, I would not have celebrated my 54th birthday. 54! I have lived longer than my parents who died at 52 and 53. No rationale to explain why it was important to me to outlive them, but it was.
I made it passed 54 birthdays. I have been able to witness my face change as the gravity of our earth pulls without mercy causing me to agree that plastic surgery might not be such an over-the-top procedure of self-consumed vanity after all.
My birthday came without a lot of fanfare, but to me it was the greatest of days. And with the greatest of days come the other days where I am tired of worrying about dying. Every day it seems in social media someone has died. Poof! They are extinguished from existence. We are all so fragile.
Death is final. It is not like losing a job where you get to pull yourself together and start fresh and find an employer who sees something in you that others did not.
A person dying cannot say, “Hold up, I need a few more days”. Death comes and overtakes you without an apology—not that it can give one—and without any concern for what you needed to finish before your heart no longer beats.
I know death is all part of the circle of life and all that soft language that makes death a lighter subject to talk about. But, the unfairness of how some get to live into their 90’s and others don’t get to see their first birthday is simply extreme no matter what kind of reason some people try to attach to it.
Knowing I am dying—not because I am alive but because I have a terminal illness, does make me think sometimes that my exercise routine that I started in August is a waste of time. I mean, I could be doing something else with that time, but I keep doing it anyway for the “just in case I keep living” scenario or maybe it is partly because I want to pretend I am fine.
Lately, the metastatic social groups on Facebook I follow have caused me to want to stop looking at my newsfeed. All the sad stories of struggle and sadness can be overwhelming. Since 2013, I have consumed as much information as I could about my disease, learning from others in my desire to keep hope alive. In the beginning I jumped right in and embraced those stories and let them be a part of my life, but I have noticed a change in me. I am finding I want to turn it off. Is five and 1/2 years of letting MBC be at the forefront of my thoughts simply too long? Have I reached the so-called “breaking point” where it is all more than I can handle? I have been slowly pulling away from it, no longer stopping for those stories of people needing help, needing someone to hear them. I feel guilty for being selfish in my needs when their needs are as important as mine. Yet, I am finding I want to forget about cancer, pretend I am the old Lisa. I want to not be living day to day worrying about my every ache and pain, fearing that my coughing or my recent lower and upper back pain is my disease saying, “Ha ha, you are really screwed now”.
Over the last few months, I have been getting the momentary sense that I am paralyzed. I can’t move because I feel unenthusiastic or unmotivated to do much of anything—stupid thoughts of death creeping in to steal my joy, my sense of worth. It is short-lived, but I know that if it takes hold I won’t be able to find my way out. So I switch gears making myself get up and get going. I feel like I am walking too close to the edge of despair where a person finds they are drowning and can’t save themselves, a place I have never been and don’t ever want to be. So, I will find the comfort I need through pretending I am fine because sometimes a person needs a vacation from cancer.
Staying busy has always helped lessen the negative thoughts that go with my situation. So that is what I intend to do. Soon the decorations will come down from the attic and adorn my home, all my children will be physically here, and I will see another Christmas—my 6th since my induction into the metastatic world. I will enjoy every minute of it. For the next month, I am going to do my best to close the door on my disease, so if you don’t hear from me in December, don’t worry, I am just pretending I am normal.
One thing is certain: I don’t need October to remind me of breast cancer. It is in my mind when I wake up in the morning, throughout the day, and in my mind when I fall asleep at night. But this October I got the added bonus of TaTa Tuesdays and check your “BOO”bies. To say those cutesy names annoy me would be a gross understatement.
Today I say goodbye to October. Tomorrow is hello to November! I get to prepare for birthday #54! Truly excited for that day.
On this final day of Breast Cancer Awareness Month, I will leave you with two entries that I found while recently looking through my old journal. I was a much younger me (13 years ago), so full of hope that I would be okay after my first and second diagnoses before things dramatically changed in 2013. Today, I am still hopeful. After all, hope is all I have when it comes to my tomorrows. That is true for all of us, cancer or not.
From My Journal: April 25, 2005. (Before I went into surgery) Words to my children--ages 10, 10, 9, 2.
I’m writing now so you don’t forget that my whole life has been worth it because of you. I write this on the following pages so you know what I experienced. Maybe it will help you understand what happened to me if I am not here to describe it to you.
Last June I experienced some pain just above my areola on my right breast. The pain was a pinching sensation that would come and go. The feel of my breast was not lumpy, but firm on the top. (I had an enlarged lymph node too.) A mammogram and an ultra-sound were clear. I was told it was most likely caffeine causing my pain. I went on with life until a woman told me about her cancer diagnosis and the bi-lateral mastectomy that occurred because of it made me wonder. A week or so later the pain started occurring again—the same pinching sensation almost like my breast was beginning to let-down milk for a nursing baby. I began feeling for lumps. Still had the same firmness as before. I did feel a little BB sized knot in the area of pain. I pressed and to my astonishment some milky fluid came out of an opening in my nipple. The fluid was yellowish, greenish and thick and a little sticky.
I made the appointment. with my doctor for Monday March 28th. (2005) She sent me to get an ultra sound and a mammogram--again. Those were scheduled for Thursday March 31st. She also suggested I see a breast surgeon. On Monday, April 4th, I was told the results were clear including the lymph node I was worried about. The next day I saw the breast surgeon. She was quite concerned about the “mass” located at 12 o’clock on my right breast. A biopsy was done in her office. Because the hole from which the tissue was taken wouldn’t stop draining, (the same yellowish, sticky substance) the doctor seemed relieved thinking it might be a delayed mastitis. (Really, though? It is 2005. My last child was born 2 years ago.) It drained until 3 am. On Wednesday, she called to say that there were atypical cells found and that the biopsy would be sent to a lab for further evaluation. I could do nothing but wait.
So we went to visit my sisters in Kentucky as planned. Just before we were going into Mammoth Cave the call came from the breast surgeon. Greg fumbled with the phone. The call was dropped as the cell signal was weak. I tried to call her back but nothing. We drove around the parking lot until we had a signal. Through my tears I somehow heard I had Ductal Carcinoma in Situ—cancer in the ducts of my breast--and that I would have to have a mastectomy. She said the diagnosis wasn’t 100% for sure, but she felt confident.
After returning from our trip, on the April 14th, I went in for a 2nd biopsy. More tissue was taken and after 5:00 that day she called to confirm the diagnosis.
On Monday the 18th, I went to see a plastic surgeon. Tuesday I went back to see the breast surgeon. She went over the amount of tissue she was going to take. The plastic surgeon would follow behind her and insert the expanders.
Friday, I was informed that surgery would be performed April 29th. (Things moved quickly.)
All kinds of emotions flow through you with this type of news. Mostly you cry because you don’t want to die and not see your kids grow-up. That is my biggest fear. Other people seem concerned about re-construction. All I care about right now is waking up from the surgery, going home and recovering. I am so scared and worried that cancer cells will be in my lymph node, and I will have to go through chemotherapy. So be it if I don’t have breasts. All I want is my life to spend with my family. I am so lucky to have you. Your daddy has given me so much. Sometimes I don’t tell him enough how much I love him. He has given me everything I have ever wanted or needed.
I love you all.
Dec 31, 2010 (Diagnosis #2 Stage 1, November 2009)
It is about 8 minutes till 12 midnight on New Year’s Eve. This year has been the hardest of my life due to chemo, radiation and Herceptin for a year. My treatments ended Dec 16th with my final Herceptin treatment. On Dec 17th, my port was removed. I am grateful it is over. PET scan showed no cancer!
4 minutes now to go and I am looking forward to a wonderful year. I will try to curse less, and realize that nothing is worth the kind of stress I often experience. The only times worthy of stress are due to the death of a loved one and a diagnosis that could end your own life. I will try to keep that in perspective when things go wrong in my life.
A bad day is not a bad day when it is a day I lived. 3 seconds. Happy New Year! It is here!