When your mane falls down

When I was on Safari in South Africa last year, the game rangers told us an interesting story about zebras. Apparently, zebras always look fat even when they are starving. Ill zebras are protected by this well-covered look to fool predators and you can never tell how ill a zebra is until it is too late. It only becomes apparent how ill the zebra is when the fat around the mane disappears and the mane falls down.

The first time my mane started to fall down was when I was on Xeloda and my feet were so badly damaged by the drug that I had to walk with a stick. I was tired after my long flight from Johannesburg to Mauritius and one of the staff directed me to the short line. I did not argue about being sent to what was an unlabeled disability line. 

I was in so much pain that it was clear that my mane had drooped even if it had not entirely fallen down. If I had known how much worse things would get as this disease takes its toll, I would not have wasted so much time feeling sorry for myself (a full five minutes).

But my mane puffed up again and I breezed through a few more chemos before my mane started doing some serious drooping again with this lung issue.

This week has been tiresome and my willpower is challenged daily. This crushing fatigue really wears a person down and stands in the way of getting anything done. 

 I’m not coughing so horribly now after finishing the two antibiotics but the edema is annoying. Lasix only does a half-hearted job of removing it. I only aim to do 5000 steps a day now, but I still get up every day so I’m still winning. Fortunately, I can work from home and do just enough to fool some of the people some of the time that I am working.

So this is what happened: Yesterday, I went to the dentist for my regular cleaning and I made another appointment for six months. Truth or optimism?

Another chemo.

Started Doxil yesterday. Navelbine did not halt the steady progression on my pleura. Although my bones have shown little progression since the initial metastatic diagnosis three years ago and my liver has been stable for over a year, the pleura of my right lung will not quit raging.

The latest installment in the tsunami of metastatic disease began at the end of March. I was at WonderCon in LA and I was having difficulty walking. Every time I walked 10 steps, it felt like my heart would burst. I also started coughing. By the time I got back to Denver, I was in trouble. I called the nurse and she made an appointment with the oncology NP for as soon as I could get there. An x-ray showed the lung almost completely collapsed. There was a sliver of air but the rest was filled with fluid. The NP walked me over to the Emergency Department and a troop of doctors in training were brought into admire the x-ray. 

Draining the lung (thoracentesis) made me feel a bit better. Basically, they put a small catheter into the space around the lungs and gently siphon off the fluid. I coughed all the way through the procedure. This was not a gentle cough. This was coughing like your lung is deciding whether to even stay in the chest cavity. It felt like I was drowning and every time I spluttered to the surface, down I would go again. After about a half-hour, I was one liter and two pounds lighter and they stopped. A few days later, it was back for a liter-and-a-half. After that it was two liters a week until I finished the semester, went to a conference, walked in a 10k and had time to schedule surgery.

I had the surgery (pleurodesis) at the beginning of June. In a pleurodesis the surgeon, puts talc between the lung and its lining to cause an inflammation that results in a closing of the gap so that no more fluid can escape into the area between the lung and lining.

Before the surgeon could add the talc, he first drained three more liters from the lung. (The total capacity of a lung is three-and-a-half-liters.) The surgeon is quite a dour young man and I was greeted in the recovery room with the news that my lung had not expanded and the surgery was unlikely to be a complete success. I pretty much flipped out on the inside then though I managed to nod with some semblance of a normal person. In my defense, I was groggy and vomiting from the anesthetic, and had tubes and wires escaping from my entire body. Four anti-emetics later, I was calm enough for a chest xray and the good news that the lung was unfurling.

I really didn’t like the morphine IV and asked them to take it down and just give me an Aleve. Of course they wouldn’t until I had gone 24 hours without hitting the lalaland button on the IV. Now, I’m no stoic when it comes to pain. I’ll reach for a NSAID as fast as the next person but this was honestly not that painful. Sure, the drain pinched when I moved or coughed but this was not “bring on the good drugs” kind of pain. After all, the lungs have no pain receptors. One of the nurses told me that most patients with the exact same surgery are screaming for analgesia every two hours. Some people just like drugs. The siren song of psychoactive drugs is just irresistible for some people. 

Where am I now?

I have a lot of edema. When I spend time on my feet, they swell up so much, my balance is affected. I’m still short of breath and struggle to walk at a normal pace. I still have a temporary drain (pleurx catheter) and I’m on a schedule to drain the lung weekly. Hardly any fluid is draining so that should come out soon. Having a tube hanging out your chest is pitiful. You can’t swim or get it wet so no soaking in the hot tub. If my options had been a weekly thoracentisis or a pleurx catheter, the thoracentisis would win every time.

Coughing has still been awesome. It reminds me of having whooping cough as a child. So off I went for a chest xray and I have pneumonia so no 4-miler for me on July 4.

Genomic profiling of male breast cancer. summary

Burki, T.K. (2016). Genomic profiling of male breast cancer. The Lancet Oncology.

This brief article added to robust research in the area of the biological differences between male and female breast cancers.

Subjects were 59 male breast cancer patients, all were ER+ and 57 were HER2-. All exons (parts of the gene) of the 241 genes that commonly mutate in female breast cancer or are involved in DNA repair were the focus of the sequencing.

Analysis showed similar mutation patterns in males and females when compared with The Cancer Genome Atlas (TCGA) study.

Exceptions were:

• 1.    In male breast cancer, genes involved in DNA repair were more frequently mutated than in female breast cancer.
• 2.    Both male and female breast cancer had mutations in “genes such as PIK3CA, GATA3, MAP3K1, and TP53.” The main differences were that these mutations were more common in female breast cancer. (E.g., PIK3CA: 42% in female to 18% in ER+, HER2- male breast cancers. This is important because this mutation is the second most common mutation in female breast cancer and has been identified as a target for treatment.) Consequently, this finding emphasized the care needed in applying trials from female breast cancer to male breast cancer cautions Reis-Filho from Memorial Sloan Kettering.

Valerie Spiers from Leeds University sees the differences at the biological level of male and female breast cancer as support for treating male and female breast cancer as different diseases that may indicate the need for “male-focused breast cancer clinics.”

Finally, Reis-Filho notes that the number of sequenced genes was incomplete and consequently did not identify specific mutations found only in male and not female breast cancers.

My final comment: If this is not new, why has so little been done?

My final final comment: Did anyone else to a double take when reading the part about 241 genes. I checked. It’s not a typo.

Am I still me?

The sicker I get, the more of a stranger to myself I become. 

Time used to be measured by teaching days and holidays. Now time is measured by weekly infusions, daily neupogen injections, monthly xgeva injections, teaching days, and recovery days. 

I used to stride at full speed down the corridors of academia and now I walk slowly. I’d like to say I walk thoughtfully but that is what I’m pretending to do. I’m actually just concentrating on not making it obvious that I’m completely out of breath.

I stand at the bottom of a flight of maybe a dozen stairs and I wonder who this person is who is drawing on every last energy cell to climb them. This is not the person who, six months ago, could run up seven flights of stairs chatting and laughing. Now all flights of stairs are my Rocky stairs. Climbing them feels like a mile sprint even as I know that I will never sprint a mile again, or even jog one. 

I am does not abruptly become she was when we die. I am is chipped away by the disease and treatment.

I walk past a window and inadvertently catch my reflection in the glass. I don’t recognize the ashen face. My pace slows down with each stop and rest but my reflection is a time-lapse played at 100 frames a second.

The pallor from yesterday has given way to the waxen bloodlessness of today. This illness has robbed me of the normality of adapting to my slowly aging body. The morphing of childhood to adult to middle age is abruptly set to fast-forward.

I still go to work and pretend that I can do it all. I’m lucky to still be on the same treatment for 8 months. However, even as the carbo/gemzar combo keeps the cancer in check, it weakens my body. My oncologist keeps saying there are many more treatments. However, the unspoken words are that my body will break down before the treatments end.

In less than two months, it will be three years since my diagnosis of metastatic breast cancer. I have reached the median survival time.  This is my 13^th treatment.

I am and she was edge closer together. 

We don’t need more treatments. We need better ones. 

Summary of "Randomized Trial of a Physical Activity Intervention in Women With Metastatic Breast Cancer"

Randomized Trial of a Physical Activity Intervention in Women With Metastatic Breast Cancer was the official title

Then there was the completely misleading title in practiceupdate.com:

Exercise No Aid to Functioning With Advanced Breast Cancer

Shame on them.

I would title this study: Too Little, Too Late

Finding: There was no significant improvement in “physical functioning” in women in the exercise group.

Participants were recruited between September 2006 and March 2011. This study took five years to publish.

There were 101 women initially enrolled in the study but three were dropped before it began.

Consequently baseline data was collected for 98 women (47 in exercise and 51 in control group).

The average time since metastatic disease for those in the exercise group was 26.4 months and in the control group was 20.4 months. If I look back on how I felt six months ago, that feels like a lifetime.

There was enormous attrition with 30 patients who did not complete the entire study (20 from the exercise group and 10 from the control group).

That left 27 in the exercise group and 41 in the control group who completed the entire study, including the treadmill test. Not surprisingly, women having chemotherapy or had the metastatic diagnosis for a longer period were more likely to not complete the exercise intervention.

Women in the intervention group increased their exercise by 64.2 minutes a week compared to the control group of 46 minutes a week (2.6 minutes a day by the exercise group if you are not subtracting).

If you add number of minutes exercise at baseline with the increase in minutes then the control group actually ended up doing more exercise than the treatment group (125.2 min/week vs 119.9). Are we still surprised that there was no difference in outcomes?

My conclusion: Women with only a few months to live are not interested in fighting the fatigue of treatment to start exercising for no known benefit when they have not been exercising before. If there is a Razzie for bullshit science, this gets my nomination.

Why am I so tired?

According to the Mayo Clinic, “The exact causes of cancer fatigue and how best to treat it aren't always clear.” The website then goes on to list possible causes from the cancer and/or the treatment. Not included in the list is the ongoing treatment for cancer is as much of a time-suck as a second unpaid job. When you already work 60 or more hours a week, you just never seem to be able to come up for air.

Like most people, the demands of living vary by the day or even hour. We stop everything to deal with the current crisis or claims on our time.

A typical day may look like this.

I struggle through the night, beating off the doubts and fears that a terminal diagnosis sends to disrupt sleep. Finally, morning arrives and somewhere between 4:30 AM and 5:30 AM, I let the dog out. She crawls into bed with me and snuggles close. If I’m lucky, I’ll catch a nap. If not, I’ll give up and try to get a head start. The day begins with coffee and a Neupogen injection before swallowing another Kytril and taking the dog for a walk. Time to check work email. Depending on the weather, I then exercise on the treadmill or outside. Getting ready for the day requires an annoying number of rests that slow me down.

I either walk or drive to the station, then catch the light rail to work. By the time I get to my office there are a stream of students waiting to see me even though it’s not official office hours. I triage problems in between getting ready to teach classes. After teaching, I try to squeeze in a sandwich in the scheduled break before official office hours. Mostly, my lunch goes uneaten until late afternoon. The nausea starts to creep back into my consciousness but I figure it will pass so I bypass the Kytril because it makes me feel even more tired.

I see students for academic advising, career advising or just being a shoulder to cry on. I listen to the hopes and dreams and tragic stories that exhilarate and tear at me. I hear the stories of childhood abuse, of rape, of heroin addiction. I try to calm difficult people. My body longs for me to put my head down for just five minutes but those breaks are rare.

There is always another student, another meeting, or another email. Some time after 6 PM, I’m ready to leave. I put on my coat and walk to the station in a dull fog of exhaustion. I stop to vomit because I should have taken a few minutes to take a Kytril.

I reverse the trip from the morning, get home, and take the dog for a walk while my husband rustles up some leftovers for dinner. But dinner is not the end of my day. I do the emergency cleaning, and then open my laptop. I have the next day to prepare for. There will be different students, different heartbreaking stories, different classes and different meetings. There will be research to read, data to analyze, and letters of reference and papers to write. Each event requires a different skill set and different preparation. In between, I can never find enough time to clean and cook, to spend time with my family, to read, and to connect with my friends on Twitter.

Once a week for two weeks out of every three, I make the 2-hour drive and present myself at the infusion center to have my day snatched away as nurses fill my veins with kytril, dexamethasone, gemzar and carboplatin. This cocktail is guaranteed to make me sick and tired but not guaranteed to improve my health. And again, two days later, the chemicals extract their real price on my body and time as I sit huddled on the couch with my laptop open, trying to make sense of the words that swirl on the page. The unique fatigue that accompanies chemotherapy closes my eyes without my permission and I lose another half-hour to a restless nap that came unbidden. Each moment the disease and treatment snatch from me is a moment that goes into my time debt that will paid out of time I would rather spend choosing my activity.

Always, time is the enemy. Fatigue is its indomitable weapon.

How many lives?

These are the anecdotes I love to share with my children to remind them how lucky they are to be here.

I’m not sure if it is just me, but there is something about knowing that I am definitely on my last life that triggers the memory of the number of times, through sheer luck, I have ducked when the grim reaper came to call. And these are just the times I know about.  

The earliest episodes for me are lost in childhood amnesia but the stories were often told.

When I was a baby, my birth mother was apparently mentally unstable. I’m not sure what that means. The description given to me was much harsher. However, in those days stigma of mental illness was even greater than it is now, and treatment was even poorer. I cannot even imagine the demons that were fighting in her head. One day, she just packed up and left her husband and children and disappeared into the silence of a world where you could leave no digital footprint. Over the years, I have truly valued my mental health and it remains an open question if I would have survived physically and mentally had she stayed.

At three years old, I had just been adopted. I was playing hide-and-seek with my siblings one evening while we were vacationing in a remote area on the coast. The cottage we stayed at was near a cliff that plunged about 100 feet in a steep drop to the waves crashing on the rocks below. My siblings went inside and no one noticed I was missing for a few hours. When it came time for bed and I could not be found, everyone went to search. At about midnight they eventually abandoned the search. Next morning, I tottered to the cottage and pointed out the bush I had slept under all night. It was just 50 yards from the edge of the cliff.

I was five or six when my brother and I woke up early one morning to play with fireworks. We didn’t want to wake the parents so we walked a bit away from the house. My brother lit the fireworks and then accidently lit my clothes. In a few seconds, they were blazing. Fortunately, my nanny was not far away and saw me. She stripped off the burning clothes before too much damage was done. I have only a small scar on my side and even that has just about faded.

I was born before the measles vaccine. Now, there is a Zulu saying that you don’t count your children before the measles. I was one of those children who should not have been counted. As I struggled to breathe from a secondary pneumonia infection, the priest was called. My parents were not religious people, but the fear of a child dying without the necessary last rites scared them. The scars left on my lungs have given many a radiologist pause.

No one knows how I contracted infective hepatitis (Hep A) at 11. There were three of us that did in our town. Two were siblings and I had nothing in common with them. One of the siblings died. I was at bedrest for six months. The only long-term effect was that I have never been able to drink more than the smallest amount of alcohol and of course, I was banned for life from donating blood.

I used to work as a surgical intensive care nurse. It was extremely stressful as I dealt with knife and bullet wounds, patients who had been thrown out of moving cars, and regular open heart surgery cases. Sometimes, we were called to give evidence in court.  I never thought of it as dangerous until I was stalked by a man accused of murdering one of my patients. He confronted me in a parking garage and informed me that I was not to testify at all about the patient unless I told the story he would give me. Or else. The next day, I gave a deposition and booked a flight to Europe.

I don’t have fond memories of Italy. While in Italy, I was walking along a quiet road when suddenly a group of young men with knives surrounded me. Fortunately, I spotted an older man carrying a walking stick and I ran up to him as though I knew him. The hooligans melted away. He was from their village.

My second son was a few months old and my husband was driving. I was sitting in the front passenger seat. The little one was strapped in his car seat at the back but he was restless. We were in the middle of the city so I got out and went to sit in the back to distract the baby so that my husband could concentrate on driving. My husband stopped at the red light and when it turned green, checked that nothing was coming and moved forward. Suddenly a car driven by a drunk driver came storming through the red light and hit the front passenger side, crushing it into the driver’s side. We walked away from the accident unharmed but there was nothing left of the car. The police offers all agreed that I could not have survived if I had not switched seats.

I was diagnosed with metastatic breast cancer just over two-and-a-half years ago. Every morning when I wake up, I punch the air in victory. I survived one more day. But I also punch in frustration because my death is just another unnecessary death. So much money collected in the name of finding a cure has been squandered on broken promises. The war we have now been conscripted into is not for our own lives. It is too late for that. We are forced to fight for women who will come after us. We are forced to stand up and say no to the idiotic pink ribbons and expose the scam that will result in 521,900 lives discarded in the wasteland of greed and apathy every year.