Off the Meds!

Thursday - July 17, 2014

Today's periodic oncology consult ushered in the latest phase in my recovery: getting off the last of my medications.  So long to my prescription strength antacid!  We'll see if the GI issues of last year have healed and determine if I can eat (and retain) food without prescription assistance.  So long to Acyclovir!  This anti-shingles medication is continuing its negative impact on my liver enzymes (still elevated today).  Rather than continuing the Acyclovir-induced liver damage, I'll probably opt to have the shingles vaccine in the next few weeks.  Shingles is a concern because I actually had a (stress-induced?) bout of shingles the summer of 1986 while working in Taiwan and prepping for our September wedding.  Our post-consult homework is to research the shingles vaccine.  UCSF has administered it to 90+ post-Bone Marrow Transplant (BMT) patients with no adverse effects.  Given the fact that my immune system is stronger than these patients, I should be able to avoid negative impacts.  We'll see ....

My oncologist continues to help me "unring the bell" about moving forward -- BMT-free and scan-free -- with hope and optimism.  My former medical team insisted that an allogeneic BMT was my best treatment option for long-term remission and cure. This plan was confirmed by a second opinion and is in accord with established and recently-affirmed national protocols.  Having absorbed and accepted this information, the lack of follow-through continues to nag at me.  I accept and welcome this gift of procedure-free living.  But I remain vigilant.  "Watchful waiting" doesn't take a holiday.  Someday I'll be able to feel a flash of warmth or clamminess and not feel that twinge of worry.  Someday ... but not quite yet.  Next steps:  shingles vaccine decision and continued bloodwork every three months to monitor markers that might signal a relapse.

All in all, that's a reason to celebrate!!  Every month that passes without relapse signals a better prognosis. By some measures I am now 2 years NED (no evidence of disease).  By my oncologist's timetable, I am now 1 year, 9 months disease-free since my last chemo treatment came to an end.  By my own measure, I am now 2 years and 2 months beyond the dysfunction and disequilibrium of unrelenting pain and double vision.  By any count, I am still in the clear and life is very VERY good :)

First Day of (my) Summer!

A pattern block eaglet courtesy of some splendid 2nd graders!

Friday - June 20, 2014

As of 3:45 this afternoon, summer has officially fledged!  Yes I may be referencing the onset of summer as heralded by all three of the Decorah eaglets having fledged as of this afternoon (!), but I am also officially and EXPLICITLY in a quieter mode after finishing 3 days of math professional development at 3:45.  Since our amazing second graders wrapped up class 2 weeks ago today, life has been chock full with:

• a visit with Jonathan here in the Bay area
• packing out of my classroom
• 2 days of workshops and meetings at school
• travel with Jonathan to Dulles
• moving Jonathan into his new Arlington apartment (read lots of unpacking, Ikea shopping, furniture hauling, furniture assembly etc.!)
• visiting Rachel and family in Winchester 
• meeting Megan in Philadelphia and traveling with her to visit Joe's mom in Pennsylvania
• visiting with many family and friends in Northern Virginia
• and then returning to San Francisco to wrap up this 2 week frenzy of action with 3 (very interesting) days of math training.

Megan and Maureen

I am ready to regroup ... relax ... and restock my energies.  With that goal in mind, I aim to embrace my summer.  I plan to contain most of my work / prep for next year to 1 day a week over the summer.  While Joe has not complained, it has been a nonstop year of work and I think that I need some downtime in order to ... breathe, think, sleep, and regain some balance in life :)  It's time to do some work at home, to enjoy my family, and perhaps just to curl up with the dogs and read.  Wouldn't that be glorious?

Oh, who am I kidding?!  I have too much fun prepping and that math training was absolutely great - so inspiring!  Exception to the rule:  surfing the net and prepping materials on my computer at night won't count against that 1 day/week goal  :)

A Manic Month

At least the hounds are relaxed (most of the time)

Saturday - May 31, 2014

Better to be busy than bored but ... we have been going flat out all month and it doesn't look like we'll return to a normal rhythm until June 27.  Yes - June 27.  Joe's May 5 trip to DC initiated this manic period and over the next 4 weeks he and I will be continuing a very unusual schedule where we are alternating travel back and forth.  It's probably one of the oddest intervals we've had in many many years!   Highlights have included Megan and me traveling east for Jonathan's Virginia Tech graduation, seeing my sister Rachel in Blacksburg,  and Joe and Jonathan's current midwest Major League Baseball 9 ballpark tour. Upcoming events include the end of my school year (and perhaps a resumption of restorative sleep patterns!), another east coast trip to help move Jonathan into his Arlington apartment and to see Joe's mom, and then seeing Megan off on her summer travels to Kyoto.  With all of this commotion, I am marking my calendar for the 2 days and 3 nights that the 4 of us will be all together here in our perch on the hill.  One of the kids will be camping out on the living room couch as we cram into the apartment but it's precious time.  We'll savor it!

2 Years (and counting...)

Sunday - May 11, 2014

Finally, my long diagnostic journey ended 2 years ago today with an after-hours phone call from my new oncologist.  He used the words "stage 4" as well as "cure" in that conversation. Carolyn and I were taking careful notes so we could share details with Joe, Megan, and Jonathan, all of whom were spread out across the continent and awaiting the news.  Today - 2 years after that horrible news/ hopeful news telephone call - Megan and I walked around the Whole Earth Festival in Davis where she had wandered around waiting for that final cancer verdict on May 11, 2012.  What a difference to traipse around together on a perfect northern California spring day exploring the craft booths, vegan dining, drum circles, and hula hoop / hackey sack diversions.  No migraines.  No double vision.  Just the opportunity to enjoy another interlude of small pleasures and family company.  Another great day of loving being a mom! 

I am certainly not going to use the "cure" word anytime soon BUT it is comforting to know that my oncologists hold it out as a possibility and that my odds improve with every month of "No Evidence of Disease."  So here's one happy mom on Mother's Day.  Grateful.  Healthy.  Thrilled to have had these 2 years and wishing for many more.

An Unscarred Liver

Saturday - May 10, 2014

Dog walks are fabulous excuses to drink in this phenomenal view!

It has been a quiet week of alone time with the hounds.  Joseph is away on travel and I am hunkered down prepping for the upcoming trip east with Megan to celebrate Jonathan's second (and last!) graduation from Virginia Tech.  Substitute plans and two weeks of advance class preparations have kept me focused and grateful as I approach tomorrow's "diagnosis day" milestone. I revel in my ability to see out of both eyes and to live migraine-free!  To have regained my health!  Hurrah!

Peace of mind has also come in the form of good news from UCSF.   My liver specialist writes that "I reviewed the pathology and the biopsy did not reveal any specific diagnosis. This is good news and makes me suspect drug-induced liver injury as the cause of your liver enzyme elevation. Are you still taking acyclovir? I have seen mild liver enzyme increases with acyclovir. Importantly, I did not see any evidence of scarring (fibrosis) on the liver biopsy that might have come from your prior high-dose methotrexate use.  And good news - your liver enzymes went down too!  But now we know for the future that, in the absence of significant scarring, we can be more "tolerant" of liver enzyme elevations if they occur again in the future."  So .... that sounds like we're simply not going to worry about those enzyme numbers anymore, yes?  I await confirmation that we are now in "watchful waiting" mode #2 for my liver.

Waiting is preferable to treatment.  I'll take it ANY day!

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.