Family Is Where You Make It

Saturday - March 29, 2014

My thoughts are in Colorado today, remembering and feeling appreciative of a quick-as-a-whip, no-nonsense, gracious, and game-for-adventure lady who occupied a special familial role in my sister's life.  She and Carolyn shared a unique and intimate connection that transcended their neighborly status.  They shared the daily rhythms of the children's activities, special events such as a recent roller derby outing, and (over the last 18 months) the debilitating and depressing routine of chemo, doctors' appointments, and medical tests.  Yes, Carolyn was there for her... but over the years she was there for Carolyn - a motherly figure ready with opinions and hands-on support and laughter - and for that I am profoundly grateful.

This morning, this strong woman succumbed to the cancer which had reappeared only one month ago.  She had faced her relapse with unflagging grace and tremendous faith.  I am so terribly sad.  Sad for my sister's dear friend and for her sons and grandchildren, aching for my sister and her children and their loss of such a force and touchstone in their lives, and yet tremendously grateful that this relationship existed - exists! Family can be found anywhere if a bond is sparked and hearts are open.  Family can be found in the light shining through a front window in the house across the street.  Family bonds can be forged by shoveling walks, putting newspapers on the front stoop, checking to see if you went to your college class when you spy a car in the driveway, and being available at the drop of a hat for dinners, errands, activities, and company.  Family means running to an open pharmacy at 3 a.m., cuddling in hospital beds, and holding a hand in hospice.  Family is where you make it.  Family is to be celebrated and treasured.  Thank you, Mary.  Thank you for being family to my sister.  She needs you.

Waves of Fury (Tinged with Fear)

Enjoying the beauty of California is a salve

Monday - March 10, 2014

Carolyn has suggested that I might have a twinge of PTSD and, while I believe she may be onto something, sometimes the blues are 100% valid.  Trauma is justified.  My armor of good cheer and optimism has been battered in the last week by ... news of a cancer death, a cancer relapse, and a cancer diagnosis in my small little slice of the social universe.  Relentless.  Insidious.  Horrible cancer.  Too many families suffering too much pain.  So I try to refortify my armor by holding my family close, smiling when thinking about friends, snuggling the hounds, working way too much (but sleeping far too little), counting the days until my April 14 scan, and praying for these families fighting this scourge.  Battle on. 

Farewell to a Happily Uneventful February

A UCSF diversion

Friday - February 28, 2014

Well, isn't it nice to have so little medical news to report? Thankfully this medical blog does not require much updating these days and for that lack of reporting I am deeply grateful.  That being said, I can't say that I am sad to bid farewell to February.  I suffered through another horrible Christine-typical month-long cold and cough (my third of the school year), some major blues (perhaps due to Jonathan's return to the East Coast? perhaps due to missing my East Coast communities?), and epic fatigue caused by what now appears to be systemic sleep-deprivation from 2 a.m. awakenings.

But as I have drilled into the children, we "focus on the positives" in this house.  So I affirm that I am blessed with a strong loving family and sustained remission from the scourge of Stage IV lymphoma.  My liver enzymes are elevated but not increasing.  My GI issues seem to be responsive to meds and under control.  I am living in a glorious locale, very close to Megan, immersed in nature, and enjoying perpetual spring and glorious views of sea, land, and sky.  I have hounds to cuddle and caretake, friends to keep me cheery by keeping in touch, meaningful work to keep me fully engaged, an amazing cohort of energetic (and funny) second graders to fill me with joy, and continued good news on the medical front to stave off those pesky mortality statistics.  My next scan and oncology consult is the week of April 14 - only 6 weeks away.  If (when?) I clear that milestone, I think I will settle down. The anxieties may dissipate.  Longed-for nights of elusive sleep may return.   Wow.   Six weeks once meant 2 rounds of in-hospital chemo.  Now I am free to be looking forward, to be port-free, and to be positive.  I am tired but I am positive :)

Statistics

Sunday - January 26, 2014

Thursday was a full day of medical appointments - bouncing around between 2 UCSF campuses.  Appointments focused on my lifelong inability to shake coughs/colds, the continuing mystery of my elevated liver enzymes, my (improved but extant) gastro distress, and of course the specter of stage 4 DLBC lymphoma.  So while I am very happy to have a new game plan to address my persistent colds and am relieved to put off a liver biopsy for at least another month, I am most contemplative about my conversation with my oncologist. 

The urgency of VCU's Bone Marrow Transplant plan hovers uneasily above my current health, undermining my piece of mind.  VCU and our second opinion at UMD placed such an emphasis on securing that allogeneic BMT.  I was even considered for an NIH clinical trial as a means to get me that (dangerous) life-saving BMT.  But no match came off the Be the Match registry.  And it turned out that I was NOT eligible for the NIH trial (because I had not relapsed - thank God).  My last option was a mini-haplo at John Hopkins where the lymphoma specialist said I should not undergo a BMT unless/until I relapsed.  UCSF strongly concurs with Hopkins.

My oncologist emphasizes that statistics are my friend.  As every month passes without relapse, my odds improve.  As noted in yesterday's wrenching article in the New York Times, "these survival curves, called Kaplan-Meier curves, are one way we measure progress in cancer treatment, plotting the number of patients surviving over time."  In my case, the greatest chance of relapse is (was?!) in year 1.  I am acutely aware that I am certainly not out of the woods.  I am semi freaked out every time I awake slightly damp or feel tired at the end of the day.  Can you imagine my angst if I ever got a headache?  Particularly on my left side?  However, the radiation of the PET and MRI scans carry their own risks.  What to do?  Well, given statistics, we are going to wait until April vacation for my next round of scans.  We are going to wait for 6 months rather than our previous 3 month interval.  And I am going to try to shake the worry and those jangled nerves.... Focusing on the positives of my health.... Being mindful of my many continued blessings....

A Wonderful Month

Jonathan  birthday gift unwrapping (in the ER)

Monday - January 20, 2014

Today is the official end to our fabulous month of our winter holiday and simply being together.  I've just returned from driving Megan back to Davis, Jonathan left for his final semester at Virginia Tech on Friday morning, and Joe and I will now recalibrate and return to our comfortable empty nest routine.  Our month was marked by explorations of Marin, lots of fabulous meals around town and at home, movies, board games, and of course much cuddling with the hounds and watching sports.  Much downtime, lots of hanging out, with Joe taking time off work and me succeeding in holding off lesson planning for large swaths of time.  Jonathan hunkered down on the living room couch as we stretched the limits of our tiny apartment above the bay.  It was all worthwhile.  Who knows when we'll have this luxurious block of time to relax and spend time together?

We wrapped up our month with Jonathan's 23rd birthday celebration on Thursday.  With Megan coming back from Davis to share the day, the kids went into the city for a meal and movie (while Joe and I worked) and then returned to Sausalito with the plan for dinner birthday festivities.  However, it's good to be flexible and - long story short - we ended up unexpectedly celebrating Jonathan's 23rd in the hallway of San Francisco General's ER.  This surprise diversion was just a precautionary observation of Joe and some extant issues yet it still raised the adrenalin.  And an inner city ER is QUITE a scene, giving us ample reasons - once more - to be grateful for our good health and connection.  All's well that end's well.  A birthday to remember :)   A month to cherish.

Barium for Breakfast

Monday - December 30, 2013
The quest continues to determine exactly what is causing my GI distress, continued out-of-whack liver tests, and whether the former is caused by the latter.  Today I returned to the exact same UCSF waiting room I had visited on Friday for my port removal.  This time I had a GI x-ray complete with stomach distending concoctions, multiple densities of barium, and acrobatic positions from both myself and the amazing system of x ray machines with which I am now more familiar than I would like.  The good news is that my "GI structure" is unremarkable and functioning normally!  No visible obstructions or abnormalities.  The not-so-great news is that apparently the mystery continues.

I confess that I am always quite appreciative (?) / reflective (?) / mindful (?) of these real-time peeks into my functioning body.  Rousing me from my anesthesia for some instructions, the neurosurgeon gave me the chance to watch the blood vessels of my brain flood with black contrast during my April 2012 catheter angiogram.  In my May 2012 Muga scan, I was treated to a full color view of my beating heart.  Today, I watched the barium drain into (and out of) my Cyprus-shaped stomach.  (Yes, my geography-nerdiness pops up even when I am squeezed into an x-ray machine, sipping barium from a straw, with my head lower than my feet.)  What a wonder our bodies are.  I find these peeks to be very spiritual experiences.

Farewell Port!

Saturday - December 28, 2013

Yes, it's a milestone day in more than one sense.  First, today marks the second year anniversary of "when all hell broke loose" on the Cayman Islands.  On Dec. 28, 2011, the lymphoma aggregating behind my left eye set off an epic migraine headache that would last until chemo eradicated it in mid May 2012.  The meaning of the phrase "struck down" became clear;  one moment I was fine, the next I was bowled over by a crippling pain of unknown origin.  "Stricken."  And yet, the SUV level of that particular lymphoma activity turned out to be relatively low - hardly more than scar tissue.  I am grateful for this canary in the coal mine that signaled a problem even when I had no lumps, no bulges, no palpable lymph nodes that would have surfaced my underlining cancer.  That crushing headache was my saving grace.

Second, in perhaps a more positive spin, today I am port-free!  My life-saving and pain-relieving chemo was delivered via a power port that is no longer nested south of my right collar bone. Yesterday, the port was removed in what turned out to be a longer and more uncomfortable outing than we had originally anticipated.  A long wait before getting started was probably a result of holiday scheduling and staffing but the post-procedure discomfort shouldn't have been such a surprise; the incision isn't small and movement of my dominant right arm impacts my port site.  It will be at least five days until I am back up to normal movement, the wads of bandages come off, and the butterfly strips disengage.

After 19 months, it was rather gratifying to actually see my port.  The UCSF radiologist and staff had not before seen such a "high profile" (= visible and bumpy) port and assured me that their titanium double ports sit much flatter under the skin.  Whatever.  I do enjoy that they are promoting their hardware but I do NOT want to use it!  After all, I do have a superstitious streak thinking that removal of the port may jinx my recovery.  I know it's utter nonsense but I have been consistently worried that port removal will tempt fate.  Watchful waiting ... and worrying!  For now, I mindfully focus on the "Congratulations!" offered by the surgeon, the tech, the RN, and my beloved family.  Cancer-free and now PORT-free in the midst of completely obligation-free weeks with the children.  All together for the holidays.  Life is grand.

A Medical Day

Wednesday - December 18, 2013

As it happens, I am weathering California cough / cold #2 on a day where I had already scheduled a sick day for my first group of liver tests at UCSF.  Somewhat energized after last night's 13 hours of deep sickly sleep, I was functional for the UCSF outing and happily backstopped by Megan's company.  The liver ultrasound was long and involved;  I won't know any results until ... hmmm... well I guess I'm not actually sure when the liver specialist will get back to me.  She felt that this test would not surface any explanations and only the yet-to-be-scheduled liver biopsy might shed light. Perhaps she will call in the interim.

Ironically, today's more comprehensive blood tests showed that my pesky AST and ALT enzyme levels have finally turned downward.  While still above normal, they are only slightly elevated (about + 10% versus +100%).  Other liver markers are high.  Methotrexate successfully eradicated my lymphoma but its impact on my liver is clear.  How this impact will affect me going forward is UNclear....  More tests next week!

As for my GI distress, last week's new prescription is doing the trick and I am feeling MUCH better!  How wonderful to be able to eat without fear of an evening of distress, disrupted sleep, and vomiting.

A New Path?

Wednesday - December 11, 2013

Another hospital clinic with another glorious UCSF view takes some of the sting out of the realization that I seem to be embarking on a new path ... investigating liver damage.  Underlying cause(s) and treatment options are amorphous.  At this point, we need to nail down what exactly is going on.  My pair of doctors (LOVE teaching hospitals!  Can't imagine going anywhere else!) laid out a number of possible causes for my continued abnormally high liver enzymes and their clear red flag indication of liver issues.  They don't feel that next Wednesday's liver ultrasound will surface the answer so now I am also scheduled for more targeted blood work and a GI x-ray on Wednesday.  These tests will almost certainly followed by a liver biopsy.  The attending physician gave a detailed description of the biopsy and my reaction is basically [shrug].  After a catheter angiogram into my brain, innumerable lumbar punctures, and a bone marrow biopsy complete with an oncology fellow narrating the procedure within earshot  to a medical student?  Sounds like a liver biopsy is nothing to get torqued up about.  The biopsy will probably happen before Christmas and perhaps then this new path may solidify.

As for my nightly battle with food and digestion, my team has given me a prescription :)  While I am very VERY wary about eating anything but bread in the evening, I am feeling emboldened so we are having pasta and sauce.  We'll see ....

Another Incident

Saturday - December 7, 2013

So, here's a puzzlement:  2 identical take-out orders of delectable pizza 2 weeks apart. Same order.  Same restaurant. A routine from a lovely (clean) restaurant that has been repeated on more than these 2 occasions.  Our previous takeouts = a settled stomach and sweet dreams.  Last night = immediate gastro discomfort followed by stomach emptying upheaval 4 hours later and an exhausting night of chills and complete exhaustion.  I truly wish I knew what was going on.    My first consult with the liver specialist is Wednesday.  Perhaps light will be shed!  Wouldn't that be nice?  At this point, evening meals seem like roulette.  Eating earlier in the day has never caused a reaction.  Eating after 5 pm now makes me wary.  Seriously considering bread and fruit tonight.  I need to sleep deeply and without incident.

Speaking of which ... last night's drama was heightened by Sadie licking and rupturing the hemangioma on her front leg.  In my gastro self-focus, I had forgotten to put on her protective collar and she managed to open up the hemangioma.  Blood everywhere ... on the sheets, through to the mattress pad, on her, on me ....  I awoke this morning to my hands rusty with blood and a heavy laundry agenda.  Happily, our ever-cheery Sadie is now necklaced, comfortable, and scheduled for what should be routine surgery on Tuesday morning.  Equally happily, I was distracted from the drama (and the laundry) by a lovely "Breakfast with Santa" event up at school where I enjoyed the company of many second graders and their families.