The Well Wishers in Community Service/Treatment #29 TDM-1 #12

On January 12, 2015, while sitting in chemo-chair number #24, I thought about the last time I was in this treatment center. It was the end of 2014. I had settled-in and was waiting to receive my drug from the pharmacy. As I opened the cover of my iPad, a young girl stopped by my chair. In her hand she held several cards.  She separated one and offered it to me. I took it and said, “Thank you.” We exchanged smiles, and she walked away.

I looked down to find three snowmen drawn in thick-lined black ink. The picture appeared to be a copy and as a final artistic touch, the snowmen were given color with crayons. I looked on the back, read the few signatures and thought, “How nice, a little holiday cheer.” Then it hit me, “Oh no, I am one of those people. I am the sick person that someone thought about when they decided what to do for a community service project." Now that I was on the receiving end of such a project, the intent of the card was lost in its simplicity. These people didn’t know me; I didn’t know them. The card did not feel warm and fuzzy. It felt superficial and fake.

I suppose I should be more appreciative of the card, but I can’t. If there was noticeable effort given to the work, I would feel differently. The lackluster endeavor made me think these young people had to do a community service project to fulfill a class’s or sorority's requirement or to pad their college applications. The forcing of young people to be involved in doing “good” for their community should at least ask that they show a certain amount of effort even if there is no honesty behind the giving.

Cancer patients are indeed in need. My former treatment center had a basket filled with items made especially for people like me. From that basket, I grabbed a few cute hand-knitted hats to keep my head warm when I was bald and the weather was cold. I appreciated the work behind the hats. When my children were small, we participated in sending cards and supplies to American soldiers overseas. (Why our government is not supplying our soldiers with these basic needs baffles my mind, but that is for another post.) The new razors, shaving cream, toothbrushes, and soap that we packed in shoe boxes I hope made those young men and women happy upon receiving them. Now that I have received a card from a stranger, I believe the cards we sent with our packages probably were not as well received as the goodies.

6 of these are mine, the two beside the small poodle mix on
the left were adopted by other families.   

Community service is good for society. I believe in it. I have rescued many dogs and cats from my local animal shelter. I gave them a warm place to sleep, medicines to heal them and finally showed them to the public where people chose them to become their new family members. During my time doing rescue work, my family added four dogs and four cats to our existing two dogs and three cats household. Life without them would be easier for sure. No de-furring of my house would be needed. No opening and closing doors to let each dog, or cat, in or out of the house would occur. If I didn’t have them in my life, there would be less love and more loneliness in my home. For that reason, I saw the result of and knew the work I was doing was benefiting many people as well as the non-human animals I saved.

It would have been nicer, at least for me, if these young people had spent time making a gift instead of a card. A knitted hat or scarf, an origami animal, or even giving out a few dollars in cash that the group had raised through a car-washing event would have brightened my day more than a few names on a post card. Am I wrong in feeling this way? What do you think?

Burning Feet/Scan Results/Treatment #30 TDM-1 #13

January 12, 2015/Scan January 29th

Though I didn’t want to, for fear my dosage of TDM1 would be reduced, I told the P.A. about my ever increasing neuropathy (nerve damage). My fingers and toes have had prickly sensations ever since I was treated with Taxotere. Over time the pins and needles have become part of my daily life. Sometimes I am highly aware of it; sometimes I am not. Recently though, my toes have started to feel like I scorched them with boiling water. During the day, the burning is there, but I can tolerate it. At night, though, when I slip into bed--WOW--the throbbing and burning set my toes on fire! The burning is lessened by morning, but my feet feel swollen making it painful to walk.

The P.A. told me there is no good treatment for neuropathy caused by chemotherapy treatments. I read about neuropathy before my appointment and learned the best treatment is dose reduction or stopping the drug altogether. Since TDM1 is giving me more time for life, I fear having to stop it. We decided to go ahead with a full-dose infusion for this treatment. By the next appointment, my scans on January 29th will be read, and if there is no progression, I will continue on TDM1 but at a reduced dose.

I had no idea the kind of pain I would experience by keeping TDM1 at full-dose. When I awakened the day after my infusion my feet were ablaze. The burning sensation started at the top of my foot, went over my toes and stopped at the ball of my foot. My feet felt swollen; each step was difficult and slow. By Wednesday, I called the nurse in Chapel Hill and told her what I was experiencing. The drug Gabapentin 100mg 3 x a day was prescribed. I started it the next day. This drug doesn’t provide pain relief for all patients. I worried I was one of the unlucky ones because each day the only relief I found was from an ice pack. Again, I called the nurse who asked me to increase the dosage to 300 mg 3 x a day. By the third week of pain, I am finally feeling relief. Not complete relief, but at least I can go to bed at night without ice packs.

Along with the Gabapentin, a prescription for Voltaren Gel was sent to my pharmacist. After one week of a game of ping pong--my insurance company would not approve it since it was an arthritis medication and only had limited success with neuropathy--I decided to pay the $59.00 hoping this gel could add some relief. With Gabapentin in my body for a few days at the higher dose, I can’t say for sure the gel helped. It sure didn’t make things worse.

My appointment this Monday will be a happy one. I had scans yesterday at 10:00 a.m. At 5:30 p.m., my youngest was enjoying her jazz class. I pulled out a book and began to read. My phone buzzed, I looked down and, since I didn't recognize the number, I sent the call straight to voice mail. A minute later, I called my voice mail, and I heard the greatest news. "Your scans look great. We will see you on Monday.” That means my disease is still not detectable by CAT scan--no evidence active of disease! I get to continue receiving TDM1. My dose will be reduced which does scare me a little, but hopefully it will continue allowing me to dance the “happy dance”.   

Cancer in the News

My good friend Meredith and I in 2010.
I met her on the day of my first
chemotherapy treatment for stage 1.

Results of a Her 2 neu positive breast cancer trial--
The MARIANNE Trial was conducted by Roche/Genetech. The three arms of the study included Kadcyla and Perjeta, Kadcyla alone, and Herceptin plus a chemotherapy drug. The end-point of increased progression free survival was not met by the Kadcyla arms of the study. Although Kadcyla and Kadcyla plus Perjeta did not produce the desired result, I think Kadcyla will become a first-line treatment for Her 2 neu disease in the future. The side-effects are more tolerable than traditional chemotherapy. Kadcyla or T-DM1 is my current drug treatment.

http://breastcancer-news.com/2015/01/05/genentech-updates-results-phase-iii-marianne-trial-advanced-her2-positive-breast-cancer-patients/?utm_content=bufferd44d5&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

Cancer—random or not?
I have read a lot about breast cancer for obvious reasons. The same conclusion is usually derived from my readings—no matter how well you take care of your body, no matter what you eat, or how few bad chemicals you are exposed too, many times--2/3 of the time according to a recent study--most cancers happen randomly and there is nothing any of us can do about it.

A recent study from Johns Hopkins University concluded that mutations occurring during normal cell division are not the only cells that develop cancer. Stem cells within many tissues of the human body undergo mutations during division as well introducing another player in this complex world. The study showed the higher number of stem cell divisions within certain tissues, the greater the chance of cancer. Despite society’s desire to believe that cancer is caused by environment and heredity, this scientific explanation steers away from victim blaming and is more easily explained as random chance and bad luck.

The number of times a cell divides in a person’s lifetime increases the number of chances that something can go wrong. There is nothing new there.  Because of this, it is amazing to me that people do not get cancer more often than they do. What was new for me was the relationship of cancer and the number of stem cell divisions in many tissues.

Breast and prostate cancers were not included in the study because it is unknown the number of times a stem cell in that tissue divides. The link to sciencebasedmedicine.org that I provide further down in this post gives information about breast cancer and environment/lifestyle in an article about this study.
The website linked below explains what stem cells are and how important they are to our bodies.www.stemcells.nih.gov/info/basics/pages/basics2.aspx

The following is one paragraph taken from that website. 

Stem cells can give rise to specialized cells. When unspecialized stem cells give rise to specialized cells, the process is called differentiation. While differentiating, the cell usually goes through several stages, becoming more specialized at each step. Scientists are just beginning to understand the signals inside and outside cells that trigger each step of the differentiation process. The internal signals are controlled by a cell's genes, which are interspersed across long strands of DNA and carry coded instructions for all cellular structures and functions. The external signals for cell differentiation include chemicals secreted by other cells, physical contact with neighboring cells, and certain molecules in the microenvironment. The interaction of signals during differentiation causes the cell's DNA to acquire epigenetic marks that restrict DNA expression in the cell and can be passed on through cell division.

People want to know exactly what caused their cancer. Others want to know what caused someone's cancer so they can avoid the behaviors of people with cancer. When I was first diagnosed, I hated the idea that some people were probably blaming me for my cancer. I imagined people asking themselves when they found out my condition, “Oh, it must have been something she ate, or it is the cleaning products she used. Maybe she didn’t exercise enough, or she must not have breast fed long enough." Someone very close to me asked in 2009 (my second occurrence, stage 1) if my diagnosis was a message to me about how I live my life. Yeah, that one hurt.

Blaming the victim is not a new concept. Lung cancer victims probably face the most blame. While scientist believe that most lung cancers are caused by smoking, I have known and heard stories of smokers who live to be 90+ years and die of old age. Clearly their cells were not affected by the carcinogens taken into their body by cigarettes. Why were their cells different from another person's? Scientists have a lot of work to do to unravel this complicated mess.

Some environmental chemicals have been identified to cause certain cancers. Certain foods have been implicated in the prevention or even the cure of cancer.  The reality is that Information advertised as fact influencing public perception is many times not fact at all.

The website sciencebasedmedicinestates a statistic of 27% of breast cancers are linked to lifestyle and environment. A lifestyle that caters to obesity can be the culprit in estrogen positive breast cancer since fat causes more estrogen in the body which is the fuel behind this most common form of the disease.  This environmental/lifestyle factor, though, shows only a link and not a cause.

People grab onto environmental/lifestyle causes because people want to believe they can control the outcome of their health. The trend of today attempts to connect a cancer-free life with certain “superfoods”. I am not suggesting that eating healthy is not a good idea. I actually prefer fruits and vegetables to fried fast food. Thinking diet will prevent cancer or even cure it gives people the illusion that they have more control than they do. Perhaps that is why people are so easily duped by fantastic claims by the food industry of the benefit of eating certain foods. This kind of thinking may actually breed less compassion for the sick because of the public perception that they did it to themselves.

I think Dr. Barnett Kramer, deputy director in the office of disease prevention at the National Institutes of Health, got it right when he said, "Over time, the messages on diet and cancer have been ratcheted up until they are almost co-equal with the smoking messages. I think a lot of the public is completely unaware that the strength of the message is not matched by the strength of the evidence." NY Times article from 2005 http://www.nytimes.com/2005/09/27/health/27canc.html?pagewanted=all&_r=1&
 
Follow the link below for information about the study.

http://time.com/3650194/most-cancer-is-beyond-your-control-breakthrough-study-finds/

The article below is very long. If you make it to the end you will find that indeed bad luck is the biggest contributor to cancer’s occurrence.

http://www.sciencebasedmedicine.org/is-cancer-due-mostly-to-bad-luck/?utm_source=rss&utm_medium=rss&utm_campaign=is-cancer-due-mostly-to-bad-luck 

What would you do if you were told you can’t receive treatment? 

I know first-hand the financial burden of cancer. No one, insurance companies, governments, individuals, or even me, has an unlimited supply of money. The uncertainties of health insurance and what it will or will not cover in the future happening here in America causes me great trepidation. Three of the drugs that are for my particular type of breast cancer were recently band in the UK by their government-run healthcare system because of the price of these drugs. This week a final decision concerning these drugs will be made.

The mind-set of the people making these decisions must be “Let’s face it, stage IV breast cancer kills. Those who have it are going to die anyway. If it is not economically feasible to keep a person alive, well that is simply reality—sorry”.  (My simple explanation here is not a valid description of how people make decisions about the approval of drugs. These words of mine express the fear and anger that I have for my existence being at the mercy of so many things--people, money, my disease, drugs, my cells.)

Anyone at anytime could decide that paying for my drug(s) is too expensive, and I am not worth keeping alive. It scares the hell out of me.

**A reader left a link about the UK's NHS Cancer Drug Fund list of approved drugs and the process involved. I found it interesting--find it here.  

**Update as of November 5, 2015 -- manufacturer lowered price of Kadcyla in United Kingdom find it here. 

Review 2014

The picture on the left has been on my refrigerator for years. I am the frog.

On Monday of this week, I had my 11th treatment with TDM-1 (Kadcyla). My first appointment --accessing my port in preparation for treatment and gathering several vials of blood for testing-- was the only appointment that went according to schedule. I waited two hours to see a doctor and more than that waiting to be treated. Perhaps the delays were due to patients scheduling their treatments for that Monday since the hospital's treatment center was closed on Thursday (Thanksgiving) and Friday last week. Without me complaining about my extremely long wait-time, my chemotherapy nurse talked to her supervisor and, as an apology, gave me a parking voucher.

On December 22, 2014, I will receive my 29th infusion for the treatment of my disease. It will also be my 12th treatment with TDM-1.

Over the course of this year I have had:  17 infusions, 4 CAT scans of the neck, chest and abdomen, drank 8 bottles of Barium Sulfate for better viewing of  my abdomen during the CAT scan, 1 MRI for the brain, 8 needle pricks into the vein of my left arm (actually 9 because a nurse had to re-do one), 17 pricks to access my port, 4 MUGA scans to make sure my heart is functioning as it should, 72.5 hours of driving to the hospital and back (probably more due to stop-n-go I-40 traffic during the busiest hours), and hours and hours of waiting (so glad I can read).

IT WAS WORTH IT!

November Project for My Kids

Yesterday was my 50th birthday. Fifty years of life --I feel so lucky.

The day was quite mundane really. Nevertheless, I thought it was the best day ever because I am still alive.

The notebooks you see on the left hold a record of many of my life's events. I have been writing about my little and big experiences since I was seven years old. These are not award winning stories nor are they very exciting --proof that my life has been very ordinary. They do however tell my story as I experienced it.

These stories have never been read by me before. I wrote them and left them as they fell onto the page. So, I never corrected any mistakes. Now that I am reading these stories, I cringe often at my spelling atrocities and at other writing errors. Now, I think perhaps I should have done some proofreading, but then again writing the perfect story was not the purpose.

I did not write about every single event, obviously, but, what I did write offers me guidance as I put together the time-line of my life.

As I read my stories, I notice that my writing serves the same purpose that it always has. When I have a problem with someone that I am trying to work through or some event in my life is emotionally stressful, I write. It is my therapy.

For the entire month of November, I decided to commit myself to a writing event called NaNoWriMo. This event inspires people to write a novel. Now, this novel can be anything the writer wants to write about. The best part is that it doesn't have to be good. It can be an untidy mess of words sprinkled on numerous pages failing completely to tell a coherent story. The purpose is to get people writing. Within that writing, a story will be created that maybe, just maybe, can be turned into a wonderful story --perhaps even a published novel-- someday.

My NaNoWriMo story has been my own story grown from the pages of those three notebooks. Once I am gone, my stories will be gone with me, so participating in this event has forced me to bring forth my untold experiences locked inside my brain. It also has given me the opportunity to create a better retelling of some of those stories told in my notebooks. I am preserving my life that will otherwise perish. My hope is my children will get to know me a little better through this effort.

This 50,000 or more word creation is going to be for my children and for my children only.

My present word count is . . . 29,451.

I think everyone should do this for their family. And, don't wait. It could one day be too late.

December 4, 2014 Novel Update --I did it! National Novel Writing Month

50,418 words

You won!

The Green Mile

Over a week ago, I began thinking about “the green mile”—not about the story line from the novel and the subsequent movie but about the meaning associated with those words.  “The green mile” seemed to be a good way to convey the fear I was feeling as I waited for the results of my brain MRI.      

Google Images

The Green Mile is a book by Stephen King which, in 1999, was made into a movie starring Tom Hanks. The story is about a man on death row convicted of murdering two girls. In both the book and the movie, a prison guard recounts the events of how this man impacted his life. In the end, the prisoner is forced to walk along a lime green floor which ended at the place of his execution. Hence “the green mile” can mean a person’s walk to their death--at least that is the way I think of it.

I am like any prisoner on death row forever at the mercy of their captor. In my case, it is cancer and not the judicial system that has sentenced me; I am not facing this death sentence for any crimes committed, but I am facing death’s permanence. I imagine the fear and despair of a person about to be executed must be similar to mine–at least initially –especially if they are innocent or in the case of victims held by evil people. With every scan, I have no idea if I will get a reprieve or find that my death date has been set.
I don’t think there is a word in the English language that explains adequately how I have felt throughout the last week and the first part of this week. My anxiety about this scan seemed greater than my prior experience with other scans. I am sure this was due to my belief that losing my ability to think or to recognize my family would be the cruelest way to succumb to this disease.

Here are a few synonyms for fear:  angst, anxiety, concern, dread, jitters, panic, uneasiness, worry, aversion, agitation, consternation, disquietude, discomposure, faintheartedness, foreboding, presentiment, distress, fright, qualm, trepidation, timidity, chicken heartedness, apprehension.

I feel and have felt all of those words. None, though, are powerful enough to explain my emotions completely. The fear can be paralyzing preventing even the most mundane activity from occurring.

Certainly others not on death row facing a death not associated with old age have also had these same emotions. If you can imagine how the recent men beheaded by the terrorist group called Isis, the holocaust victims, people sacrificed to their gods, young men and women in war, and most recently the woman in Oregon, Brittney Maynard, who plans to take her own life under the “death with dignity” law of that state feel or felt then you have some idea of how I feel.

Physically my breathing seemed shallow; my shoulder and neck muscles were tense; my appetite diminished; my emotions were fragile. I am involved in a game of Russian Roulette. The gun is pointed at me. When the trigger is pulled, will this be the shot fired releasing the bullet within the chamber or will the chamber be empty?

I nearly had myself 100% convinced my breast cancer had spread to my brain. I played the audio over and over in my mind of how I would respond if one of my doctors or nurses called with news of brain metastasis. Somehow, I felt thinking this way would make it easier to cope if it were true. Isn’t there a saying “hope for the best, prepare for the worst”.  I may seem like a negative Nellie, but there is always a bit of optimism hidden in my thoughts somewhere. So, some moments I played the other audio in my head. The one where I receive fabulous news that my life can continue on the same course it has been for another 3 months until the next scan.

My nerves were so on edge about the impending phone call I decided to put my phone on silent. I thought not hearing the phone ring would protect me from the full-force of any horrific news. I felt a sense of control by being able to get the news on my terms when I was ready to handle it. I thought I would be able to listen to the voicemail and figure whether it was good or bad news based on the message received. If I was told to call to discuss the results, I would know it was bad. If a good message was left, my fears would be relieved without having talked to anyone.

For two days, I left my phone on silent. Every so often I would pick up my phone and look for my missed phone calls and voice messages. Monday, in late afternoon, a missed phone call appeared. My heart raced. I clicked the unlock button and viewed the call. It was my husband. I took a few deep breaths to relieve my panic. The hours moved on and no phone call came about my MRI. I was convinced it must be bad news. In my experience, bad news always comes late in the day when a doctor has no more patients to see, and he/she sits down at their desk and starts returning or making phone calls.

This whole week I grieved because of the things I have not finished. I haven’t written the letters to my loved ones I want to write (I am finding those so hard to begin) or finished little projects around the house. Most importantly, my youngest is only 11 –still too young to lose her mother.

On Tuesday, phone still on silent, I went outside with my daughter to practice tennis, leaving the phone on the counter. Once finished with our fun, I walked in the house and passed the phone several times. When I finally had the courage to look at my phone, I saw that a new voicemail message appeared on the screen. My daughter retreated to the back porch sparring herself of any bad news I might hear.

“Can I do this?” I said to myself. “I have to”.

I accessed my voice mail. My nurse practitioner began to speak with not such an enthusiastic tone in her voice.  I listened.

Then I hear . . .

“Lisa, I am looking at your scan right now. It appears to be clean”, the nurse practitioner said.

Good news CAN come late!

I paced the floor and listened to the rest of her words.

I retrieved my daughter from the back porch. “Good news”, I screamed. We hugged and jumped up and down for probably 10 minutes.

I am not dying today, and I am not dying tomorrow. I am walking “the green mile”, but it is a long walk for now.

SCANS-GRAPEFRUIT

Treatment #25 TDM-1 #8 Sept 29th

My appointment with the doctor and the infusion that followed were uneventful. I truly prefer it that way.


I love grapefruit. One of my fond childhood memories involved eating grapefruit at my grandmother's house in Tampa, Florida. Since I was on a new treatment, I thought that maybe I could once again enjoy this fruit. But, sadly once again I was told I could not eat the fruit or drink its juice. Grapefruit can interact with many drugs - prescription and over-the-counter. Follow this link to find out if any drugs you are taking may be causing your drug to be less effective or even toxic. Always ask your doctor about food interactions with any new treatments.
http://www.fda.gov/downloads/ForConsumers/ConsumerUpdates/UCM292839.pdf


Scan #2 for TDM-1 October 15th
My scan results still read "No Evidence of Active Metastatic Disease"!  Isn't that fantastic?

Treatment #26 TDM-1 #9 October 20th

My head is still having strange tingling sensations that have moved from the back of my head to my left temple. The back of the head may be the result of a pinched nerve in my neck. My scan showed nothing unusual - thankfully. The tingling sensation at my temple is more concerning. It could mean that there is something compressing the trigeminal nerve inside the skull. This nerve splits into several branches and exits the skull spreading out to the sides of the face. There is one on both sides. There are several causes with one being a tumor that can cause pain or tingling around the eye, cheek, lips and mouth.  My favorite nurse practitioner thought it was worth taking a look at my skull and brain to see if there was any metastasis of breast cancer to the area along this nerve. This of course sent fear through me.

Though efforts were made to have the MRI department fit me into their schedule that day, it was not to be. Instead, it was decided that an MRI would be done in Wilmington. If there was anything found, the scan would be read again by the radiology department at Chapel Hill.

Next post, I will tell you the results.