Liver, liver, whaddya know?

Wednesday - April 30, 2014

A liver biopsy is quick, painless, and generally complication-free.  The only real inconvenience is the waiting and resting before you are cleared to go home.  Altogether, Megan and I were at the hospital for 6 hours today.  Ultrasound, then biopsy (LONG needle), then hours and hours in the recovery room waiting for any internal bleeding to manifest (it didn't) and for a later blood test to come back clear (it did).  I used my medical moxie today to lobby successfully for a liver panel to be added to the customary post-biopsy blood draw.  It's always good to have more data points to try to determine where my enzymes are and why they might be at that level.  "Good idea," said the doctor.  "At this point I am an old-hand, self-advocating, professional patient," I thought.   BOO-yah for getting more tests with one blood draw!

Megan prepared for her upcoming qualification exams alongside my gurney while I read and at one point gave in to the temptation of resting supine for hours and just napped.  Although we were only curtained off from a very busy and crowded recovery room, it was surprisingly peaceful and free of interruptions.  Rather calm.

The liver specialists believe that my methotrexate infusions may have scarred my liver.  Perhaps the biopsy will confirm this theory.  Results may be in within the week.

A Thought - full Day

Friday - April 25, 2014

Today - my father's birthday - is always bittersweet.  Our father, Herb Carter, would have celebrated his 82nd birthday today but he died suddenly of an aortic aneurysm shortly after celebrating his 63rd birthday.  So many years have passed, milestones commemorated, grandchildren born, all without his cheery, impish, supportive presence.  Herb Carter was truly a marvelous man.  I miss him, I miss him, I miss him and yet - daily - I am heartened and amazed by the abiding strength of his love and connection. A cherished legacy. What a remarkable father!  He can still make me smile through my tears.  I thank God that he did not suffer a long death and that he did not endure the anxiety and grief of facing a long illness.  One day he was excitedly enjoying family travel in Australia and the next day after a brief hospital visit he was gone - within minutes -  in a Sydney ER.

This year's ache of his loss is deepened and refracted by the news that a dear YOUNG friend has relapsed a second time with Hodgkins Lymphoma and is now preparing for an allogeneic Bone Marrow Transplant.  Our prayers and thoughts are focused fully on her and her family and our anxiety is channeled into action.  Bone Marrow donation remains the exception rather than the norm yet it is not the invasive bone marrow biopsy technique that exists as common knowledge (NOTE: my bone marrow biopsy was equivalent to the painfree pressure / discomfort of my c-section and remember that this invasive procedure was done by a MED STUDENT with an oncology fellow telling him what to do step by step sotto voce right behind my manhandled hip).  Today's bone marrow donation is essentially a longer kind of blood donation.  If we simply spread the word that the common image is OUTDATED and WRONG, perhaps more people will register and more of us who suffer from blood cancers will have an opportunity for treatment and for long-term survival.

An allogeneic Bone Marrow Transplant still looms for me as my next step in case I relapse. And yet, I have already batted ZERO off the Bone Marrow Registry. There's nothing quite like that knife-slice knowledge that you have NO MATCH coming off the registry. That's it. An allogeneic bone marrow transplant is the last medical step and recommendation to thwart that scourge cancer. But no one matches you. You have come up EMPTY. What next? You're on your own. Just you, your own oblivious malfunctioning bone-marrow, and that conniving cancer that has duped / invaded / hijacked your body. There's nothing equal to that pit in your stomach as you face mortality straight-up, as you see your kids' terror as they try to stay strong for your sake. And yet, you know that there MUST be a match somewhere - in someone. If only a donor would come forward with a quick cheek swab and then perhaps an outpatient simple blood donation process. If only ... if only. Have you registered as a donor?

Megan says it better.  

"Some difficult news has struck a community that is very dear to me and the next few months might be hard for all of us. If you see that I'm sad and you're looking for something that you can do I have MANY suggestions:

* Please, please, please if you are considering signing up to be a bone marrow donor and have not yet gone through with it, go to be http://bethematch.org/ and get a kit to swab your cheek for free

* If you need any information that might make you more comfortable with being a donor, feel free to ask me. The normal, outpatient procedure if you're asked to donate is a week of shots and a few hours donating blood in a chair.

* If you've got some spare change, donate to Elizabeth Stone's efforts to fundraise for the Leukemia and Lymphoma society or drop some running hints before her *half marathon* in two days. http://pages.teamintraining.org/nca/nikewhlf14/elizabethstone

* If you're already on the registry or you're not able to donate, see if you can spend some time this week dispelling the misinformation about donation. No big needles. No nights in the hospital. No long term health risks.

* Pause and take some time to get some perspective on your day. Life may be difficult, unfair, and heartbreaking, but we are here and we have the opportunity to share so much gratitude and hope! Keep the faith. Take care of each other. Believe in magic. Those words have never been more true."

No More Scheduled Scans

Wednesday - April 17, 2014

Today's big (good) news from the oncologist is that he does not advise scheduling regular and routine PETs and MRIs.  Given the fact that I remain symptom-free 18 months since my last chemo round, the danger of excessive radiation outweighs the potential of early red flags.  The plan going forward is that I will visit clinic and see my oncologist every three months while staying (hyper) vigilant for symptoms such as night sweats, fever, and any lumps.  So I am off the hook for full body x-rays for the near future!

Today's other (not-so-wonderful) news from the clinic is that my liver enzymes are all way back up - back to the post-methotrexate highs of Virginia.  I have no symptoms of liver disease.  Without the steady iterations of blood tests, we would have no clue about the liver enzymes.   But the blood doesn't lie so the time has come for that much debated liver biopsy to try to determine what inflammation or disease is producing these stubbornly elevated levels.   I'm scheduled for the day-long, out-patient procedure in two weeks.  Can you believe that we're on yet another diagnostic journey?  At least we know that scans have shown that my liver and other nether regions are tumor-free.  Cancer won't be the answer in this case.  But what exactly is causing these stubborn liver enzymes to be so out of whack?

Best MyChart Message Ever

Tuesday - April 15, 2014

Just got that most excellent clear-scan news via UCSF MYchart!  Hurrah!!  Time to breathe!!

"Subject: MRI and PET/CT normal
Hi Ms. Ammirati,
Hope you are doing well. I wanted to let you know that both your MRI and PET/CT were normal.
I think we should discuss decreasing the frequency of the scans at this point.  See you in clinic on Thursday."

And that's all we needed to know, thank you very much!

2014's Scan Day #1

China Basin looking towards the ballpark

Monday - April 14, 2014

6 months is a long time to wait but this morning the opportunity came once again to get that precious sneak peek inside body and brain via IVs, contrasts, PET, and MRI.  Watchful waiting is UP!  It's time to reconcile my lack of outward symptoms with the internal evidence.  It's time to rule out any lymphoma lurking in bone, blood, and organ.  It's time to get that delicious go- ahead to once again breathe easy and get on with it.

The all-morning scan routine is now familiar, almost procedural, but it is still a jolt to bear witness to the visceral fears and manifest tears of a radiology waiting room.  Families huddle in the hall on cell phones parsing allowances and details with insurance companies.  Hospital-braceleted patients sit in chairs looking more exhausted than worried.  It's the families that seem to show the strain. Going in with hair and energy brings on feelings of both gratitude and guilt.  I am very very fortunate indeed and I count my blessings.

My predictable pre-scan anxiety has been somewhat dissipated by activity -- work (of course), a happy visit from Arlington friends, excitement and vicarious nerves for Megan's qualifying exams (today!), and planning for Jonathan's May graduation and June move to Arlington to begin his job.  Now comes the wait for my oncologist's phone call.  Or will he just tell me the news when I see him on Thursday?  Time for some more watchful waiting.

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.