Zombie state

          Towards the end of my fifth cycle of six I am experiencing the cumulative fatigue that I remember from last time, though this time seems more extreme.  Which I don't really get since I am only on one chemo drug.  Maybe Taxotere's cumulative effects are building from the six doses I had two years ago.  Lifetime accumulation... Just saying I'm tired doesn't really begin to describe it.  One of the women in my online support group described it better than I can and said we were welcome to share, so here is the most accurate description I have read or heard:

I have a few words to say about being tired.

After over five years of chemotherapy, fatigue is becoming a constant companion. While some drugs were worse on me than others, I have needed more sleep and it takes less activity to make me tired. Pre-cancer, I exercised one to two hours daily. Now I exercise 2-3 times a week on a good week, and not at all on others. I sleep 10-13hrs every night (more after chemotherapy, a bit less as it leaves my body). I do normal activities but need more frequent rest breaks. If I exercise (ride my bike, walk or take an aerobics class), that is pretty much all I do that day.

Chemotherapy fatigue is not amenable to rest. I mean, resting does not bring enough recovery to become fully physically active again. Some therapies cause outright exhaustion to the extent that I felt like a “zombie” all day. Others, who are in remission, may not ever get rid of the reduced energy and tiredness, even years after treatments have ended. Long term medications like femara and tamoxifen aggravate fatigue and cause joint pain. So even survivors are left with energy deficits. As we age, the rate of cell reproduction declines. I suspect that this is partially the reason we are so tired. Chemotherapy itself kills off healthy cells and it also accelerates aging overall.

Exercise is an oft-repeated remedy for tiredness. In addition, it has proven health benefits, including maintaining a higher rate of cell replication, heart health, aerobic capacity, strength, flexibility and balance. I know this to be true. As a former avid exercise enthusiast, a good brisk walk after work or a long car ride revived my energy. Recent studies have indicated that exercise can delay or inhibit 
cancer from metastasizing to other areas of the body.

Unfortunately, if I choose to exercise, I cannot do the housework or the yard work afterwards. I feel especially sorry for young mothers with cancer. How do they keep up with an active toddler who rises at 6 a.m. after waking her parents three times during the night?

My point is that calling it fatigue or tiredness is inaccurate if it has resulted from cancer and chemotherapy. It is not “normal” fatigue. It happens without any physical activity at all. It does not disappear after a good nights sleep. It overwhelms unpredictably (I need sleep now!). If a cancer patient pushes herself to keep up in spite of it, she may spend 2-3 days in bed recovering.

We could use a better word for it; we could use better education for the oncology and research professions; we could really use a useful remedy and we would be thrilled with a treatment that does not cause fatigue. 

        Monday I have the last (for now, and if scans look good) infusion session with the chemo agent Taxotere, which is the culprit in my current zombie state.  Six or so weeks after that I may be a little less dazed and confused.  


       

     

          

Another Perspective: a really good Pink story

You know, the pink ribbon thing has its detractors, for good reason.  And if you read the previous post you would conclude I am one of them.  There are two sides to every coin, however, and when love and good intention come into play I remember that (as I tell my husband all the time) everything is complex and nothing is as black and white as we want it to be.  I am remembering one of the sweetest, kindest things that has ever happened to me, and it involved, yes, a bunch of pink ribbons.

In June I graduated from my year-long medical assisting certificate program.  Just before school ended I was diagnosed with metastatic disease.  I finished finals while feeling the lovely (not) effects of the first chemo, and waffled about walking with my classmates at graduation, which was also my birthday.  I decided to power through the graduation figuring, if nothing else, I would at least try to seem awake and not completely fallen apart for my kids.

I went to school with some amazing women who, unlike me, did full time school, full time work, had young children at home, and muddled through various other challenges to make it to school each day and get the thing done.  Shannon is one of these incredible women.  She's  a single mom, worked a full time job, and completed the certificate.  As I walked into the room where we were all gathered to line up and walk into the theater, I noticed that many of my classmates were wearing little pink ribbons pinned  on their graduation gowns.  Shannon had made them, and was running around making sure all of us had one pinned on.  It dawned on me that it was June and not October, and that the pink ribbons were a specific and not a general statement, and that the statement was a show of solidarity and support for me.

I was completely stunned, honored, and proud that night to wear my ribbon and to accept the support of this wildly quirky and diverse group.  I will never forget this, and for this reason the pink ribbon has a very special place in my heart.

Realism/Pragmatism/Positivism/Truth...and a really good summer

Before I start the diatribe, I just want to report that even with everything that's happened - cancer recurrence, my work plans thwarted yet again - this has been a good summer.  Jon was home, I was home, we relaxed, we watched many, many World Cup games, we got a puppy, we spent a lot of quality time together and with the kids.  We left our daughter at college for the first time, and rather than feeling mopey, I feel really, really happy for her.  She is happy, engaged, excited, busy.  It could not be better.

Now, to the diatribe:

Like Halloween costumes for sale in September, or Christmas decorations in October, the onslaught of Pink (breast cancer awareness marketing) has begun already.  I belong to an online support group with almost 900 members, all of us living with metastatic breast cancer.  It would be an understatement to say that Pink and all it stands for drives most of these women crazy.  It drives me crazy too.  Even before my mets diagnosis, when I was being treated for my earlier stage cancer in 2012 and 2013, I bristled at the language of fighting, battles, beating cancer, kicking cancer's ass, whatever lingo somebody can come up with to make it seem like I could actually have some part in whether I lived or died.  Truthfully, I felt even then that were that the case, what of the people who die?  Did they not fight hard enough? Did they not have what it took to kick cancer's ass?  Pink culture implies that if you find it, you can beat it.  It has also become a tool for selling stuff in the guise of raising awareness, as if being aware that breast cancer exists somehow makes it more "beatable."  I believe we need spaces free of obligation to be the smiling, pink-clad, inspirational fighters, expectations that have somehow become the norm for people with cancer.  Sharing information about metastatic breast cancer is a crucial part of that space.

The truth is that no one - oncologists, researchers, pharmaceutical companies - knows which patient
will respond successfully to a particular treatment, despite knowing that the treatment is indicated for the type of breast cancer the patient has.  I appear to be pretty fortunate right now, as the standard protocol of Taxotere/Herceptin/Perjeta for metastatic HER2+ breast cancer, has made the detectable lesions in my lungs and lymph nodes go away and those in my liver shrink substantially.

Another truth: there is no data that shows the number of patients living with metastatic breast cancer (MBC).  Those who are Stage IV at initial diagnosis (6-10% of patients) are counted.  Those diagnosed at earlier stages who then have metastatic recurrence are not counted.  My cohorts in this group and I are counted at initial diagnosis, then when we die. Statistically there is some practicality here.  To avoid confusion a patient's stage is never changed, to avoid data showing that everyone with Stages 0-III survives and everyone with Stage IV dies.  For statistical purposes I am Stage IIIa with metastatic recurrence to lungs, liver, and lymph nodes.  However, when I went back to my wonderful oncologist with a lump in my neck and it turned out to be MBC, there was and is no registry in which to enter the data of recurrence.  So strange as it may sound, no one knows how many are floating
around on this leaky boat.  MBC is sort of like the movie "All is Lost."  Robert Redford is on a solo sail and thing after thing goes terribly wrong.  His only recourse is to scurry around fixing each problem as it arises, moving onto a new plan as each repair becomes ineffective, as it inevitably will.  If you haven't seen this amazing movie do, unless I've ruined it for you by comparing it to MBC.

The problem of not knowing means that there does not exist a data-driven need for research on treating and even curing MBC.  Breast cancer kills no one. It is the addition of the M-word that renders it deadly.  Currently less than 5% of breast cancer research dollars goes to research on metastases, though 30% of patients with breast cancer at any early stage will go on to develop metastatic recurrence.  But... since the only official numbers are the 6-10% of Stage IV diagnoses, this 5% does not appear to be as beyond comprehension as it actually is. 

I can tell you from my short (so far) experience in this scary world that people like me feel pretty
isolated a lot of the time.  We are past the point of being cheered on with "you can beat this!" and "keep positive, you'll be fine!" Though we are treatable (Treatable means that we are given a treatment and stay on it until either it stops working or our bodies can no longer tolerate the treatment, then move onto another treatment, and so on until the options have run out.), we are incurable.  Many people are understandably uncomfortable with this paradigm.  We are here, alive, and many of the treatments do not cause hair loss so we may not look "like a cancer patient." We have daily lives that wax and wane with treatment side effects.  Sometimes conversations swirl around me now and I feel (whether or not it is accurate) that I cannot relate to anything being said.  Never mind relate or contribute - because of the chemotherapy I have had I have trouble even paying close attention! There is no more normal for me, although I am told by my support group comrades that after about a year with it I will settle in to my "new normal."  People say, "Well... none of us knows when we will die.  I could get hit by a bus tomorrow!"  This is well meaning, but we MBC ladies (and the 1% who are men) can see the bus coming and we know we will not be pushed out of the street by a well meaning stranger.  And that is just very, very different than the universal mystery of when death will come.

My mom tells me I should be more positive.  She means well, and I appreciate that she has been one of my biggest supports since this all began two years ago today with my initial diagnosis of breast cancer.  I believe that being realistic and hoping for the best is the best any of us can do, and is the mark of positivity.  Naivete and misplaced faith misses that mark.  I appreciate each day.  I am grateful for the scientific advances (especially with regard to HER2+ cancer) that have kept me alive this long.  I am grateful for my support system and know how lucky I am to have it.  I know everyone in my boat is not that lucky.  I believe that speaking difficult truths in a pragmatic way is not negative.  It is simply real and that is how I have always tried to be.  When I was on the school board I was known to my colleagues as the one who would say the thing that needed to be said, that no one else wanted to be the one to say.  So be it.

To wrap up on a pragmatic, real, positive note:  If you feel the urge to do something in commemoration of the Pink month, please consider contributing to one of these two incredible organizations. 100% of METAvivor funds go to research grants for metastatic breast cancer.  Metastatic Breast Cancer Network fights for treatments to extend life, advocates for MBC patients, and has excellent educational resources.

Hammered in July

This is a post I wrote and never published back in July.  I thought I might as well post it rather than ignoring what was happening and starting over in what is now about to be September. Post in progress that is more current!

Not the hammered of college years, spoken with a Massachusetts accent and nods of hungover understanding all around.  I am just hammered by chemo.  This week has left me empty, literally ("how much diarrhea is too much diarrhea?" is the question continually replaying in my head).  I finally broke down re: the sugar-free thing and got some apple juice and Gatorade, as water tastes like crap.  My muscles feel so weak that sitting upright at a wedding this afternoon for an hour was a challenge.  Yoga is necessary, and I go, though I am breaking a sweat standing with my arms lifted.  I have had three treatments, hopefully with three to go in this regimen, and I am already feeling burned out on feeling sick, helpless, and generally useless.  This is not good.

I read an article that spoke to me today.  Some gems from within:

"Cancer permanently disfigures a person’s self-image, and neither the culture nor his curriculum vitae includes the materials for a recon­struction."

"Cancer patients are betrayed by our culture’s dishonesty. Those who recover from the disease are hailed as “survivors”—a term appropriated from the Holo­caust—but while they are struggling with cancer and undergoing sometimes painful treatments for it, they are barely acknowledged. They are consigned to what Ralph Elli­son calls a 'hole of invisibility.'"

"When you are first diagnosed, you obsess over the numbers. You vow, “I will be one of the ten percent!” Your vow, though, has no effect whatever on the outcome of your disease."

The upshot of all this is that I, like many in my boat, really cannot stand "battle" terminology.  It implies that in losing one simply did not fight hard enough.  As the author of the above states,

"The journalistic convention in obituaries to praise the dead for their “coura­geous battle” against cancer is a lie designed to comfort the living and healthy. At best the cancer patient consents to 
treatment."

Is this really happening?

The thing is, I do not feel all that sick.  Chemo makes me sick for a week and a half to two weeks each go-round, but this week I almost feel normal.  Aside from the bald, sweaty head.  So how can I be so sick?  But I am, terminally, desperately sick.  The first time I was treated in 2012, I thought it was mentally challenging to have neoadjuvant chemotherapy, traipsing around with my cancerous breast until surgery, at which time I hoped to have all of the cancer lopped off.  This time, there is cancer in all kinds of places, and I realized quicky that there is no lopping off or taking out, no resection, no -ectomy (surgical removal) of any kind.  How to love, accept, and be kind to my polluted body?

This is difficult, but my answer with an epic six weeks or so of practice, is three-fold.  It helps that Jon simply does not seem to care whether I am bald, whether I have nipples or breasts (real ones, that is), whether I have eyebrows or feel disgusting.  He seems to just love and accept me anyway.  (One day I made a comment that if I don't stop incessantly grinding my teeth I will have none left.  His comment, without taking the blink of an eye to think, was "then I would feed you like a mother bird.").  Secondly, devotion to yoga, almost daily.  And third, swims, preferably the outdoor kind, which feel so incredibly purifying and cleansing. Oh, and fourth, I am attempting and mostly succeeding in feeding my body a much more chemo-friendly diet.  Since I stopped eating refined sugar, cow dairy, coffee, and most meats, I have not had the cloying, nasty, metallic taste in my mouth, no canker sores, and generally better energy.  Duh, I guess, but it has taken this to eat the way I should.  I drink several cups of green tea each day and have started having a cup of turmeric milk each day.  What is this, you ask?  Put 2 cups coconut or almond milk in a saucepan, add 1 tsp turmeric, 1/4 tsp black pepper, and an inch of fresh ginger, sliced.  Heat on medium until simmering and turn down to maintain gentle simmer.  Simmer five minutes or more, strain out the ginger.  Enjoy.  It makes two servings.  Turmeric has many healing properties that are accessible when cooked with ginger and black pepper, as Indian cooks have intuitively known for eons.  Many more foods taste
good to me now - sweet potatoes, avocadoes, whole grains, many vegetables.  Again, duh...

So this is where I'm at.  Trying to accept my body which has betrayed me again.  Trying to quiet my mind and its insistence on blaming myself for this trouble, and all the stress and sadness it is causing my family.  Oddly, mixed up in all this is the reality of a pretty nice summer.

Meta.Stasis.

Meta - beyond.
-stasis - stopping or controlling.

I am now (as of my graduation last night) a certified medical assistant so I am really, really proficient in the terminology department.
It has been a pretty big shocker to find out, two months after a CT scan with no visible evidence of disease (just the several old rib fractures and scarring in the lung), fun radiation side effect), that my right clavicular and mediastinal lymph nodes, my lungs, and my liver all have breast cancer in them.  It is ER+, PR+, and HER2+.  It has a high Pi67 number which says that it is fast growing.  Between the time I found all this out and now (three and a half weeks), I started a regimen of chemo, my daughter graduated high school as a valedictorian (brag brag), I finished and graduated from my program.  Needless to say it is a most surreal time.  It is difficult to focus on enjoying my time with my husband, kids, and friends while trying to steer clear of being angry and depressed.  Now that would really be a waste of time.  But I am pretty angry at times, and pretty depressed anyway.
My chemotherapy is taxotere, pertuzumab, and trastuzemab.  The first and third I had before.  The second is a new targeted therapy for HER2 that was not approved at the time I was being treated just a year and a half ago.  I will have three rounds, at three week intervals, then scans to evaluate the effectiveness of the treatment.  If it is going well (I am told that a 20% reduction in cancer presence is a good result for that interval) I will have the remaining three rounds and work from there.
I now have stage IV cancer, and am trying to adjust to the fact that for as long as I live (there is no way to predict how it will go) I will have cancer.  I will never not have cancer.  My treatment is not with intent to cure but with intent to tamp down the cancer and prolong life.  My cancer is incurable, but treatable.  People sometimes live years and years with metastatic cancer, and sometimes they don't.  Everyone is different and no one's story can be a predictor of someone else's story.
My goal is pretty simple.  I would like to spend as much time as possible with Jon, Ani, and Tim.  I would like to see Ani settled in college with friends and a support network.

Is any if this really shocking?  Not so much, as statistics bear out over and over again, but I continue to be shocked each day when I wake up and remember what is happening.
One thing I know: my husband is awesome, my kids are awesome, and my friends are awesome.

This says it better than I can...

http://virtualmentor.ama-assn.org/2013/08/msoc1-1308.html