Wednesday, December 10, 2014

#dnafn

I am trying to be cool, so I made up a hashtag.  I wonder if I am trending... whatever that means!  Anyway, my hashtag stands for Disaster Narrowly Averted, For Now!

At left is my radiology report from Monday, discussed with Dr. Raish yesterday. To summarize, it says, "bla bla bla bla "NO CURRENT EVIDENCE OF METASTIC DISEASE" bla bla bla bla bla.

Dodged another bullet!  I am six weeks past my last chemo treatment, feeling pretty great.  I will continue having infusions of Herceptin (trastuzumab) and Perjeta (pertuzumab, the wonder drug) every three weeks until my scans show disease progression, which will happen sometime but for now I am trying to feel just a little bit normal for a while. After seven months as a stage IV cancer patient (and over two years of heightened cancer anxiety) I am trying to let out the panicked breath I have been holding.  I am willing to hope, and to attempt again to live my life without always waiting for the other shoe to drop.  I have no illusions, of course, because that is me (realists unite!) - I will always have metastatic breast cancer, for as long as I live.  I will be in treatment for it, for as long as I live.  But, to emulate an amazing woman in my support group I will allow myself to judge the state of things by how I feel, which right now is relatively well, despite my diagnosis.

Treating MBC involves drug regimens in order (first-line, second-line, etc.).  Inevitably after some unknown period of time on each regimen, the cancer adapts and changes and progresses, or the treatment is no longer tolerated by the body.  At that time, a new treatment is begun, hopefully after discussing options with one's oncologist and family, and making decisions together as a team. According to the Cleopatra study, which I have discussed before, the median survival time on this regimen is almost five years. This means that if I am lucky, I could have at least five chemo-free years before disease progression.  There are several good options available for down the road, and if the recent past is any indication (Perjeta was not an option just two years ago; Kadcyla was still a trial drug just one year ago), the longer I hang around the more options will become available. 

This may be more optimism than you are used to from me.  I don't want to go too far over the edge so I'll end this post.  This is the other side of scanxiety, a nice place to be.

Sunday, November 9, 2014

The Calm After the Storm


The social worker I see on occasion at my Portland clinic said that it is common for people in my situation to go into survival mode during the initial crisis and treatment for metastatic disease.  You know, you put your head down, embrace the suck, and do what needs to be done.  It is clear that this is exactly where I have been since late May.  I research, I write educational pieces (read: unemotional pieces), I research, I think logically about next steps, and I conserve energy to manage my treatment effects.  I’ve been having chemo since earliest June and haven’t spent much time imagining what happens when the initial crisis management phase of this shitstorm actually goes away, but it is about to ratchet down a few notches.  After eight Taxotere treatments (the actual chemotherapy drug in my regimen), I am confronted with the simultaneously very desirable and very terrifying break from it on which I am now embarking.
Of course I want to be off of chemo.  Chemo SUCKS.  I am ready to lose the corpse-like taste in my mouth, the intermittent nausea and continuous exhaustion, the way I am out of air just going down the driveway for the mail and then back up, the prickly, insanely itchy skin, the baldness, the lack of all the other hair, the runny, irritated eyes and nose, the peeling fingertips, the diarrhea, and the feeling (reality?) of having aged fifteen years in the last two.  But the chemo is killing cancer, has killed a bunch of cancer a second time.  Logically I know that the two targeted biologic drugs play a large role, but what if that role isn’t the starring role?  Ideally, continuation of Herceptin and Perjeta every three weeks will give me some undefined length of time to enjoy life without chemo and without enough cancer in my system to kill or alter me too terribly.  The trouble is no one has an inkling of how long that might be.

Aside:  Can I say – I simply cannot imagine being a medical oncologist.  I would know exactly what to do to treat a patient, and if I were an excellent MO I would be really good at talking with my patients and answering their questions honestly.  I would be up on the latest treatment advances and clinical trials, and would be confident I was offering my patients the best research and data-driven treatment options.  And yet, as much solid data are behind these treatments, I simply would not know whether and how dramatically my patients would respond.  Basically it is all a crap shoot.  And as a doctor who has taken an oath to heal the sick, I would know just how little is in my control, no matter how brilliantly I do my job.  Like my patients, I would live scan to scan.
According to the Cleopatra Study results, adding Perjeta to Herceptin and chemotherapy as a first line treatment of metastatic breast cancer increased median overall survival by 15.7 months to 56.5 months, an unprecedented and definitive increase.  The logician in me cannot leave well enough alone and reminds me that this is median overall survival.  Some of us will get more, some will get less.  None of us making our bargains with treatment knows to what decimal point our own lives will measure out.  And neither do our doctors.  It is what it is.  

So… on leaving the initial crisis mode:  As the sympathetic nervous system (fight! flight! both!) calms down, the parasympathetic nervous system takes over (maybe the bear that was chasing me is gone), restores normal heart rate, and slows the adrenaline.  Obviously this is somewhat metaphorical, as I have not been living for six months in a literal “fight or flight” mode.  It is just a little bit fun to try to recall my physiology lessons.  
Now, with the initial chemo winding down (hopefully for a while), there isn’t the distraction necessary to avoid acknowledging the certain shortening of my life.  My social worker cautioned that as the initial difficult treatment period ends, Other things might come up.  Like, oh, feelings.

This is the problem of leaving the bomb shelter, however temporarily.  Now there’s time to think, maybe enough energy and brain space for a change to contemplate the existential issues surrounding my disease.  Every few weeks it seems, someone in my online support group dies.  There is not the remotest possibility of becoming accustomed to this. One day it will be me. 

It’s been real (as we used to say when we were cool) perfecting my eye drop accuracy and eyebrow pencil proficiency.   
It’s been real distracting myself with the daily care of a tiny baby puppy.

It’s been real reading reports on treatment advances and study outcomes, making myself feel coldly intellectual.
It’s been real feeling sick, tired, and mopey, hunkered down and hermit-like, avoiding as much as possible the well-meaning but pitying looks of people I encounter.

Goodbye to six months of chemo-land, and a shy and reluctant hello to those Other things, whatever they may be.      

Wednesday, October 29, 2014

Slice of life of a long-term cancer patient - me, that is...

Here is the email I wrote to my nurse navigator yesterday.  As my last gasp in attempts to educate about the real world of breast cancer before October is done, I share this with you.  I know from my support group that my story is not unusual or exceptional.  The specifics may all be different but the gist is the same.  This all said, I have had some wonderful service as well from some amazing and wonderful people during the last two years.  There are plenty of positives for each negative I address.  The biggest positive in all this is Maria, who is mentioned in the diatribe below.

Side note - I did have my infusions today at my local hospital which was great.  I got to swim before, walk dogs after, and ditch the four hours of driving so that was cool.  Everything was uncomplicated. 

Side note #2 - My mom likes to chat after my chemos and make sure everything went OK.  Her words of wisdom today (very wise I might say):  "Don't forget to take your marijuana!"

If you have the stamina for this reading I will be surprised.  I and therefore my writing was torked by steroids yesterday!


October 28, 2014
Dear Annette,

Thank you for talking with me yesterday.  This letter will likely be more detailed than you are looking for; however I want to emphasize both the length of time that these issues have been going on, and look at two different timelines – the infusion issue and the general scan and other procedures issue.  So… away we go.
In general, the issues with the office at OHSU where I see Dr. Raish come down to a lack of communication with Columbia Memorial, a lack of response to requests by Columbia Memorial (CMH), and a lack of efficient communication with me, which includes two incidents of being treated pretty disrespectfully by Sonia and another person whose name I do not know at the OHSU Oncology office.
When Dr. Raish was my provider at CMH, at the end of appointments either his nurse or a medical assistant checked in with me, confirming the procedures that Dr. Raish had ordered and for when, and most of the time handing me the appointment cards right then and there for those procedures.  If they needed to delay making those appointments for some reason, they informed me when they would call me with the information and then did so.  I have had no such service at OHSU.  Dr. Raish, who is really the best doctor I have ever had (this tirade is not about him) tells me what I will need and when prior to a particular appointment with him, tells me he will order said procedures (e.g. scans, echos, bloodwork), and we say goodbye.  It is never clear to me whether I or someone else should call (and call OHSU or CMH – I never know) to inquire about these procedures or schedule them.  After several phone calls I made attempting to wrangle how it works I was told in no uncertain terms to stop trying to take care of these appointments myself.  Authorizations hadn’t happened yet and in theory the OHSU authorizer Sonia did not want me to have to pay out of pocket.  I believe the phrase “Well, if you didn’t call here so much…..” was used by either Sonia or the other person at the desk, I am not sure. 
All that said, I will share the two above-mentioned time lines of trying to resolve these issues to make very clear what the stressors are for me, a metastatic cancer patient who, as you can imagine, has enough stress already to go around.
August 4, 2014:  Infusion and visit with Dr. Raish.  Jon and I speak to Dr. Raish about whether it is possible to do some infusions in Astoria, as that would keep us from driving into Portland every three weeks when some of those visits do not necessitate an appointment with Dr. Raish.  He says that that should not be a problem, and that he would contact Maria, nurse navigator at CMH Oncology.
I am called by CMH and we clarify that I am not transferring care but hoping just to have some of my infusions there.  I am told I need to have an initial visit with Dr. Lycette to set the process in motion. First available appointment is September 8. I take it and we establish then that I can go ahead with the plan of infusions.
September 13, 2014: I should have had an infusion as we had planned, on the 16th at CMH but Maria informed me that she could not get the authorization without making it a permanent switch and she was rightly reluctant to do that without further investigation.
September 16, 2014: Jon must unexpectedly take another day from work to take me to Portland for infusions.  We speak with Sonia to establish where the problem initiates as if it is with MODA I can make calls and appeal my case with them.  She says that because I take Herceptin, ICORE needs the infusions to be in one place.  She also comments that a change of venue would have to be reauthorized every time.  So, we are not sure if it is actually impossible or would just be a lot of work.  She concludes that I am not allowed to switch back and forth.
October 7, 2014: We ask Dr. Raish if it is a good idea to switch the infusions permanently to CMH.  We are unsure as to how often I need to see Dr. Raish.  We tell him we are not allowed to have infusions at CMH and then have infusions at OHSU on those dates I see Dr. Raish.  He says he has “not heard of this problem in his entire career.”  In any case, we three decide to do infusions in Astoria as visits with him should become less frequent.  He tells us he will go ahead and order the switch.  I receive no other instruction.
October 16 or 17: I call Maria (CMH) wondering whether I am supposed to call and schedule or whether she has received orders to set me up at CMH.  She has not received any orders.  She began then to work on acquiring orders and collecting proper paperwork to set me up for my October 28 infusions.
October 22, 2014: I call Maria, as I am beginning to worry about my infusion date approaching.  She is still attempting to get required paperwork with the signature required by CMH and has not had a response. 
October 27, 2014: I planned to call Maria, as I needed to pre-medicate with dexamethasone if infusions were to happen on the 28th (today – guess what? I am not there getting infusion today, my scheduled three week interval – I am here at home typing this long, long letter instead!).  Maria tells me I can indeed have my infusions on the 28th or the 29th.  I go home and take 8mg dexamethasone assuming I am having infusions today and am just waiting on a call for a time to show up.  Maria calls in the afternoon.  As the process has taken so long and taken us right up to the wire she is reluctant to guarantee that my Perjeta will arrive in time to do the infusions today and it would be safer to schedule for the 29th.  I cry (an infrequent occurrence) on the phone with Maria out of sheer frustration.  I then call Annette.
Basically, in three weeks OHSU people were incapable of sending the order in the first place, making the process a mad rush to the end, and did not send requested information in a timely manner.  I am uncertain as to whether they realize that all of this paperwork is for CANCER PATIENTS who need care when they need it!  The sheer stress of wondering and trying to work through these issues (it should not be my job to do so) is UNACCEPTABLE.
Timeline 2 – Re: scans and echos
I have been perplexed when it comes time to schedule scans and other procedures which I do at CMH.  Yes, scans are stressful enough without wondering whether I am going to get an appointment slot by the time someone at OHSU sends the orders.  I have been more proactive than the OHSU people appreciate, as after a bunch of time goes by where I hear nothing (again, in my experience with Dr. Raish in 2012/2013 this was never an issue – I knew where I was going and when before I walked out of my appointment).  Here is where the comment about me “calling so much” came into play.  However, I feel if I do not advocate for myself orders are not being asked for or sent in the first place.  Here is the latest example of this issue in play.
September 16, 2014:  Dr. Raish wants me to have a CT and an echo prior to October 7 appointment.  He kindly suggests that instead of having the scan on a Friday and having the stress of the weekend that we do the scan on Monday the 6th and then have appointment Tuesday the 7th, getting the results as fast as possible.  I like this idea.  During my infusions on this day an infusion nurse (don’t know name) states to me that she sent the orders for the echo and CT. 
Again, I wait for the calls I am supposed to wait for with scheduled appointments.  They do not come.  I know appointments at CMH will fill and as I need the CT on a specific date and as it is one with an NPO order I want to get in as early that morning as possible, so once again, I begin to worry.  A week or week and a half goes by.  I call radiology at CMH and there is a spot left in the late morning for CT on the 6th.  He nicely puts my name on it while he looks for the order.  No order.  I also schedule echo, which could have been done any time during those three weeks.  No order there. I call Sonia, am scolded once again, as I am not supposed to schedule myself.  I am told it will result in me paying out of pocket and the CT will not be authorized by MODA until the morning of the 6th, 60 days from the prior CT.  I do not understand how it can be scheduled the morning of.  This CT will tell me if my regimen is working or not.  This is a highly charged scenario.  I am told it will work out.  Thankfully, nice rads clerk at CMH is willing to hold the spot.
I call OHSU about the echo a few days later, as there is still no paperwork at CMH.  I am told once again to stop doing these things.  I clarify with the person on the phone that indeed I should cancel the appointment and wait to be called.  Ok, I cancel it.  And wait. 
October 2, 2014:  Afternoon – I am concerned as I have no echo appointment and my options are dwindled to Friday or Monday afternoon.  I call OHSU again.  Yes, I am the crazy lady that keeps calling.
October 3: All day I hear nothing.  At 4:57 I get a voice mail (I was in the bathroom!) that says I have an echo at 11:00 Monday morning, which happens to be the time of my CT.  I call right back but Cardiology clinic has closed.  I have to wait until Monday and hope I can shift the echo to the afternoon.  This rendered the entire day Monday a day of drinking contrast and having two separate contrast IVs. 
October 6: I am sitting in the rads waiting area drinking my two bottles of contrast beverage and I can hear the rads clerk on the phone, attempting to have someone fax a signature so the “patient” can have scan.  He mentions patient is In the Waiting Room at this Moment Drinking Contrast Beverage.  I know this is me as I am the only person in the room, and I am indeed drinking contrast.  More stress.  I do end up getting my CT.
Further, I would like to say that Dr. Raish has greeted me more than once in the exam room and has had to leave the room to “track down” radiology reports.  In my training as an MA I was trained unequivocally to have labs, radiology, anything regarding the patient in the doctor’s hands before he/she went in to see the patient, so he/she could read, process and figure out how to explain the information to the patient. 
I need to tell you I am already stressed about the scan that needs to be scheduled prior to my December 9 appointment with Dr. Raish.  I have no expectation of getting an appointment in a timely manner.  I cannot believe that MODA cannot authorize a scan with a date on it that is within the rules of authorization prior to said date, so that the appointment can at least be set in advance.  Though I am just a cancer patient lying around I still do have a life, and like everyone else I like to have my appointments scheduled as far ahead of time as possible.
Lastly, you should know that because I have had to permanently switch all infusions to CMH I will spend a day going to Portland to see Dr. Raish on December 9 and another day on the 10th at CMH getting infusions.  Ideally, of course, I would do it in one long day in Portland but that is not to be.  I do not think I am asking too much by wanting to stay with my original oncologist, Dr. Raish, through these difficult times, and at the same time believing the system should work as efficiently and conveniently as possible for the PATIENT.
Annette, this is a lot but I needed to say all of it.  Thank you for your time and being willing to listen.  Take care,

Laura Snyder

 

Tuesday, October 21, 2014

Iatrogenesis

Definition - inadvertent complications induced by medical treatment or the activity of physicians.

A year ago, I was in school working towards a medical assisting certificate in what I now look back at as that pleasant, productive, treatment-free, "cancer-free" year.  One day during my medical terminology class we came to the root word "iatro-" meaning treatment.  When paired with the suffix "-genic" (caused by), we have iatrogenic.  The example that day was "iatrogenic rib fracture due to the administration of CPR."  As I tried unsuccessfully to sit still, shifting in my chair, leaning forward and back and stretching my torso, I inwardly acknowledged the irony of me sitting there trying to breathe.  At that time I was struggling constantly with severe shortness of breath and intermittent pain on my right side due to radiation-induced scarring in the upper lobe of my right lung, as well as several radiation-induced rib fractures.  Iatrogenic, indeed.

The whole metastatic nightmare aside for today, survivorship of breast cancer - really any cancer - is not necessarily the pretty, robust, healthy Pinktober picture.  I recently read an article by the mother of a childhood cancer survivor.  Of course, she was beyond ecstatic that her daughter had survived, but she wanted the reader to realize the cancer "journey" does not end with the news that one is cancer-free.  This child had been hospitalized repeatedly for multiple iatrogenic issues and was not and would not in the foreseeable future be a healthy child.  Emotional, physical, and financial stresses can be givens in this world of survivorship.

It is touchy to be in that place.  I was in that place last year. Who wants to complain about surviving a killer disease?  Who wants to seem ungrateful or unappreciative?  Yes, ultimately being alive is the desired endpoint of treatment.  I would much rather be here, "above ground" as they say, than the alternative.  But being alive after cancer treatment can come with myriad conditions that affect quality of life moderately to severely.  Many survivors have an aversion to asking for help with or even discussing these problems, as they seem somehow "small" compared with oh, you know, dying of cancer.  Thus survivors may feel themselves to be physically and/or psychically broken or struggling, but don't want to rock the boat with what seem in the big picture to be "small problems."

Here are some examples of what the rosy cheeked-survivors in all of the October PR may be experiencing:
  • Radiation-caused rib fractures:  All of the literature call these a rare complication.  My oncologist and the radiation oncologist said they could count on the fingers of one hand their patients who had these.  I am one of them.  At this reading my scans show five now-healed fractures.
  • Scarring of tissue in the radiation field: I also have experienced this, in my right lung and right pleural lining, and will continue to find breathing difficult because of it.  As my plastic surgeon (a survivor himself) said to me - "Radiation....  It's forever."
  • Post Mastectomy Pain Syndrome:  According to a study detailed in the American Society of Clinical Oncology newsletter, "20-68% of breast cancer patients have chronic postoperative breast pain, commonly known as post-mastectomy pain syndrome (PMPS). Usually this is neuropathic in origin and can begin in the immediate postoperative period, but may appear 6 months postoperatively or later. It often persists beyond the normal healing period, sometimes years."  The cause is unavoidable surgical damage to the T4 and T5 nerves where they exit the chest wall.  I am one of these patients as well.  After several weeks- and months-long bouts of debilitating pain my damaged intercostal brachial nerve has settled with the help of gabapentin, which I will likely be taking for the rest of my life. 
  • Chemo brain:  Some people think I'm joking when I reference my chemo brain, and well meaning people commiserate with me saying "me too! I can't remember a thing any more!"  Technically known as post-chemotherapy cognitive impairment (PCCI), this affects up to 75% of people during treatment, and up to 35% have issues that continue for months after treatment has finished.  Concentrating on a task, retaining information, inability to focus on reading, remembering what someone just said, a constant feeling of fogginess - these are some of the symptoms that plague me and others in my shoes.  I did not feel completely over it almost a year and a half after the end of my first chemo regimen, and now heading into my sixth month of chemo for MBC, I feel in possession of a very small fraction of my previous intellectual abilities.  I owned a book shop for thirteen years but struggle now to read at all.
  • Rapid, forced menopause: The severity of menopause symptoms is heightened by the abruptness of what is in the natural setting a potentially years-long process.  This can be a result of hormone suppression to treat hormone receptor positive cancer (treatment ranges from a daily pill to removal of the ovaries) or chemotherapy or both. While being slammed into and through the menopause process is difficult for any woman, it is especially difficult for younger women with breast cancer, of which there are many.  A process that in the natural setting can take years happens instantly (with oophorectomy) or in a few short months of chemotherapy.
  • Fatigue: Please see this post for an excellent and accurate description of cancer treatment fatigue. 
  • Peripheral neuropathy: I don't have this one!!! At my worst my finger tips tingle, peel, and crack at some point during every chemo cycle.  Severe pain or numbness in hands and feet can seriously affect activities of daily living, like picking up objects, buttoning a shirt, even walking.  At its worst heart rate, blood pressure, and organ function can be adversely affected.
  • Complications of breast reconstruction:  I have been really lucky on this front.  I had one surgery to both remove my breasts and replace them with implants.  This is not the norm.  Though my reconstruction site has never been comfortable (I had no idea it would feel this way almost two years out), I have had no moderate or serious medical complications.  I read about women frequently who have been in and out of the operating room with complications of reconstruction, who have had surgeries into the double digits, who have had infections, inordinate amounts of pain, undesirable visual outcomes.  Cancer patients make rapid, difficult choices about surgery and many other things as well.  As I have written before, we choose constantly between extremely undesirable things (no breasts or fake breasts is just one example, and one of the more benign examples at that), and yet we have to choose.
  • Anxiety: "People who have not confronted a life-challenging illness may be perplexed by the residual anxiety in patients, long after they have successfully completed treatment," states Jan Hoffman in the NYTimes Well Blog on the subject.  We're wired to respond to threats, and cancer is a threat.  For survivors, there is always the threat of its return. Data suggests that spouses are also prone to heightened anxiety after a cancer diagnosis and well into the years of survivorship. 
  • Heart problems:  Some of the drugs that treat cancer carry the risk of damaging the heart muscle over time.  One of my drugs, Herceptin, is one of these.  Regular echocardiograms monitor the heart function and if it becomes compromised a potentially life-saving drug is off the table.  Additionally, the patient has the added physical and emotional burden of requiring treatment for cardiomyopathy.  Radiation can also damage the heart. 
I know I am at the tip of the iceberg here, as far as breast cancer's iatrogenic conditions.  As October nears its end, I wanted to once again address some of the uncomfortable and less-discussed issues around breast cancer, even when that breast cancer is in the probable 70% that do not recur.  I think that even when I felt I might be a survivor, I never felt like I was "done" with it. And I know that I am not alone. 

Thursday, October 9, 2014

"Dramatic response at the far end of the spectrum"

That was pretty nice to hear from Dr. Raish on Tuesday.  He is really pleased with my response to this regimen.  He also called it not only a good, but a dramatic response.

After six rounds of Taxotere, Herceptin, and Perjeta, over the course of five months, there are no visible cancerous lesions in any of my lymph nodes, in my lungs, or in my liver.  There is a 6mm lesion (probable cyst) in the left lobe of my liver.  Since I'm ultra-paranoid and a major worrier (plenty to worry about in my world!) I looked back through all of my radiology reports mining for the left lobe liver lesion.    The good news is that it has been there, unremarkable and unchanged, in every report.  I remember going over my first CT scan with Dr. Raish in the fall of 2012.  Me being me, I freaked out about the thing in the liver, described in the report as "unremarkable." He reassured me that unremarkable is a very good word in a radiology report.  In the last couple of years I have learned to read these things and let the pieces go that don't say things like - oh, for instance "likely metastases."  But I still had to check out the liver thing.

There is a woman in my support group who had eight Taxotere before continuing with just the HER2 therapies.  I brought the question in of whether there might be a difference between the six or the eight treatments.  Dr. Raish said it is partly a question of tolerance of chemotherapy.  In the all-is-relative world of Cancerland, though I bitch and whine, I tolerate the chemo well.  I am fortunate to have very little to no neuropathy, and am as functional as I can be.  Since in the recent Cleopatra Study (google if you are into things like this) the average number of Taxotere treatments was in fact eight, we decided to keep going.  So at this point I have had seven and will, barring problems, top it off with one more in three weeks.  The Cleopatra Study looked at the regimen I am having, in the metastatic setting, and showed excellent results.  

I also brought up the question of hormone receptors.  The current incarnation of my cancer is 3% estrogen receptor positive and 60% progesterone receptor positive.  At the end of this chemo we will test my blood for the presence of either of these.  It is assumed that I am post-menopausal, but it will be good to confirm this or know otherwise.  At that time we will discuss hormonal treatments (not Tamoxifen, as that was a bust) - probably an aromitase inhibitor.

In addition to the CTs I had an echocardiogram last week, as Herceptin sometimes damages the heart and must be discontinued.  Fortunately my heart function is still good so we can continue the medication.  The procedure was not fun.  The tech decided after around 45 minutes probing around that he couldn't see well enough (inducing mild panic attack) and I had to get my second contrast IV of the day.

I checked in with Dr. Raish about the turmeric and the occasional pot, and my lovely oncologist's response was, "Whatever you're doing, keep doing it!"  I am pretty neutral on the idea of any influence I can have over this disease; I feel extremely lucky to be having a good response to
treatment.  For whatever random reasons, some people respond well and some don't.  But... just in case, I will keep on keeping on with yoga, swimming, walking, turmeric milk, and the elimination of cow dairy and most refined sugar.

Word of the Day: IATROGENIC - this means caused (-genic) by treatment (iatro-).  I am fortunate to have had virtually no symptoms or conditions that are or were caused by cancer.  However, like the majority of breast cancer patients, there have been Plenty of iatrogenic issues.  More on that another time, but for now, my most surprising and most random iatrogenic condition: the ongoing rib saga:

I'm not sure whether this is funny or not, but I will give you the rib report.  I am a rare person that suffered rib fractures on my right side as a result of the radiation I had in 2013.  The first mention of them said there were two fractures, on ribs 2 and 3.  Subsequent reports documented fractures in ribs 3, 4, and 5, with the 5th reported as chronically unhealed.  My scan from last week said, "overlying healed right rib fractures involving the third, fourth, fifth, sixth, and seventh ribs, stable."  Um.... whatever, I guess.  It explains many of the sensations I have on that entire side of my body.  

I think that's everything.  I have nothing whiny or mopy to say today!

The Elephant in the Pink Room

Just grabbing this to keep it on the blog in case the paper removes the link.  And of course because I am me so I can continue to fix my mistakes!

The Elephant in the Pink Room

In July of 2012, at age 49, I was at the peak of fitness.  I’d just completed my second Olympic distance triathlon, and was ready for more of the same in my fifties. But one month later, after the sudden appearance of a large lump, I was diagnosed with breast cancer.  It was ER+ (estrogen receptor positive) and HER2+ (an aggressive subtype marked by an overabundance of the protein HER2). Following a challenging year of chemotherapy, surgery, radiation, and the HER2 targeted therapy Herceptin, I was, according to available detection technology, cancer-free.  

Fast forward to May 2014: nine months after my last Herceptin infusion and two months after a clear CT scan, a lump appeared suddenly in my neck. I was quickly diagnosed with metastatic breast cancer (MBC) in my lungs, lymph nodes, and liver.  Scans halfway through my current treatments showed no detectable lesions in my lungs or lymph nodes, and those in my liver are much smaller.  Even if I am “NED” (no evidence of disease) following this regimen, I will continue it until it loses its effectiveness. Then my oncologist and I will determine my next strategy, because while MBC is treatable, it is not curable.

October is Breast Cancer Awareness Month.  The 13th - just one out of 31 days - is dedicated to metastatic breast cancer awareness, despite the fact that 30% of women with breast cancer will be diagnosed at some point with MBC. Metastasis is defined by its prefix “meta,” which means beyond, and the root word “stasis,” meaning a state of stability or control. Approximately 6 to 10% of initial diagnoses are Stage IV, or metastatic. The remaining cases of MBC may be detected weeks, months, or years after initial diagnosis and treatment.  

During this month’s races, fundraisers, and other awareness events, I feel like a fish out of water.  I am one of that 30% now, without the tidy story of a “battle” fought and won.  Despite the extraordinary work of advocates and the strength in the community of people living with MBC, our stories are rarely included in October’s media portrayals of breast cancer survivors.  I appreciate this opportunity to share some information about MBC.

Breast cancer localized in the breast does not kill.  It is the spread of cancer from the breast to vital organs that results in a terminal diagnosis. Metastases typically occur in the lungs, liver, lymph nodes, brain, and/or bones.  Metastasis comes to women (and men - 1% of breast cancer patients) of all ages and may arise despite the stage at initial diagnosis, whether 0, I, II, or III.   Laudable though they are, the goals of awareness and early detection do not bring to light important truths about breast cancer. According to cancer research advocate Debra Madden, “Regardless of when breast cancer is diagnosed, it is the molecular characteristics of the cancer (such as HER2 and hormonal status) that most impact the recommended treatments and outcomes.” Additionally, more and more patients are diagnosed while younger than recommended screening ages.  MBC is not a disease of people who didn’t monitor their health well enough and “let the cancer progress too far.” Though there are many factors to consider regarding recurrence risk, early detection does not guarantee recurrence-free survival.

Approximately 40,000 individuals die each year of MBC, a number that has not changed since the year 2000, per the Metastatic Breast Cancer Network (MBCN).  I am forever grateful to the scientists that identified the HER2 protein and developed Herceptin.  While long term survival rates have improved because of such advances in targeted treatment, the number of deaths has remained the same.

Though an estimated 155,000 individuals are living with MBC in the U.S., I have never seen a media focus on this group in October.  Medical sociologist Gayle Sulik notes that “by the 2000’s commoditization of breast cancer shot past advocacy in terms of time, attention, and resources.  Pink ribbon visibility started to replace deeper understanding of the complexities of the disease.”  And breast cancer is indeed more complex than awareness campaigns reveal.  According to the National Breast Cancer Coalition, we still do not know how to prevent recurrence or metastases.  Thus, the (also laudable) goal of prevention is impossible at this time.  As esteemed metastasis researcher Dan Welch, PhD, emphasizes:  "To prevent something, you have to know its cause. We have no idea why cancer cells spread, let alone what prompts them to disseminate throughout the body."

There are many more unknowns. No one knows why one person’s breast cancer metastasizes and another’s doesn’t.   We know that certain cancers are more aggressive than others, but all types of cancer metastasize. No one knows why certain patients do or do not respond to particular treatments, even when those treatments are the standard of care for their cancer subtypes.  Often the level of response seems to be based on luck - very good or very bad. There is no data registry for those living with metastatic recurrences. We are absent from statistics. Those who are Stage IV at initial diagnosis are counted.  Those diagnosed at earlier stages that recur are not counted.  We in this group are counted at initial diagnosis, then at death.

The current treatment model for MBC is to try a specific regimen until either it stops being effective or the body stops tolerating it, then move on to the next, and so on, until there are no options left.  There is a public misconception that MBC has become an “easily treated” chronic condition. In truth, the treatments and choices we face are difficult and life-altering.  “Treat/Scan/Repeat” is the Stage IV mantra. We just hope that as time passes new, effective, and more targeted treatments will be developed.

The key, then, is research.  Currently less than 5% of breast cancer research funding goes to metastatic breast cancer, even though an estimated 30% of breast cancer patients will go on to have MBC.  I hope you are moved to contribute directly to MBC research and advocacy: 100% of METAvivor (www.metavivor.org) donations fund grants for MBC research, and the Metastatic Breast Cancer Network (www.mbcn.org) fights for treatments to extend life and advocates for MBC patients.  
             The facts are frightening and uncomfortable to face, but they dictate the dire need for research to prevent, treat, and one day cure metastatic breast cancer.  There can be no cure for breast cancer without solving the puzzle of metastasis.  Awareness, early detection, and prevention behaviors - all important objectives  - do not guarantee survival of this insidious and epidemic disease. The unanswered questions are unacceptable, as are the gross inequities in research funding that continue to delay answers to them at the cost of so many lives.

Monday, September 29, 2014

It's PINK Time!

Pinktober is upon us. Well, not quite yet, but it may as well be. I have already seen posts about making "boob" cookies, and pink-coated candy apples. Side note: eating a bunch of refined sugar is not exactly a great prevention behavior. It has become a holiday where there is money to be made selling trinkets.  I absolutely appreciate the use of symbols (like the pink ribbon) to show support and solidarity.  I have been on the receiving end of such support and was touched beyond belief.  However, much of Pink marketing is more about making money that does not necessarily go to research towards a cure or services for breast cancer patients. 

I belong to a support group with almost 900 women with metastatic breast cancer. We all know that early detection does not save 30% of lives. Our group's initial diagnoses run the gamut from stage 0 to III, with a fair amount of initial diagnoses of stage IV. Mammography is not great at detecting the fast growing, aggressive cancers that tend to pop up between screenings. Breast cancer in the breast is not fatal; its spread to bones and vital organs is. Almost one in three people with breast cancer will go on to have metastatic breast cancer, and no one knows why or in whom this will happen. It happened to me.

Breast cancer is not the "easy, curable" cancer (if only detected early enough) that Pink campaigns portray it to be. Less than 5% of funding for breast cancer research goes to solving the fatal riddle of metastasis. This October, think about which causes you support financially. Think about where the money is going from your race entry or t-shirt purchase. Choose an organization like www.METAvivor.org and give directly. METAvivor devotes all monies raised to metastatic breast cancer research grants.

Here in Astoria, our most proud landmark, the Astoria Column, will be lit up pink starting on October 1st. September is Childhood Cancer Awareness Month, whose color is gold. Why was it not honored with a Column bathed in gold?  Many families in our community have been tragically impacted by childhood cancer. In fact September is also Ovarian Cancer Awareness Month, but I think very few people know that. It is unpopular and perceived as negative not to get behind popular "causes" like PINK, but I choose to share some truths and hope to redirect some focus to the UNpretty side of breast cancer, in hope that more lifesaving research will happen.

Tuesday, September 9, 2014

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.  


       

     

          



Tuesday, September 2, 2014

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.


Sunday, August 31, 2014

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."

Tuesday, July 8, 2014

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.

Saturday, June 14, 2014

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.