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.