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.