To Google or Not to Google?

Wednesday - October 10, 2012

That is the (tricky) question ... when facing or in the midst of cancer treatment.  Stage 4 cancer?  Well, with that sobering diagnosis, you know that the virtual cortisol level on the web is probably sky high and that the possibility of coming face to face with your mortality is a certainty.  Yes, I may want some information  - especially any reassuring statistics - but to get to those gems I know that I will have to pass through some bleak survival rates and be overwhelmed and devastated by other cancer fighters' descriptions of chemo effects and poor outcomes.  I have known my limits.

So my decision has generally been to avoid internet searches except for the rare instances where I have narrowed my inquiries to Google Scholar or used "medical journal" in my search to funnel my results to drier, more academic discussions.  Joe, Megan, and Carolyn have been braver internet researchers, sharing their results in our conversations or sending me links.  All three have probably read more on marrow.org than I have;  Joe says that he has read every word.

I bring all of this up because I spent a large chunk of yesterday reading cancer blogs, Stage 4 DLBC Lymphoma blogs to be specific.  Megan has been reading cancer blogs since late spring and yesterday when she once again referenced a blog she had read, I decided to gird myself and just plunge in.  My takeaways are that remarkable wells of resolve and strength exist in the face of great suffering in the cancer community and just how variable and personalized all of these cancers are.  Oncology truly is an art as well as a science.  I also realize and am appreciative once again that I have been extremely fortunate in my response to treatment.  While I can't slough off the 3 neutropenic fevers that landed me back in the hospital, I have really had little to no side effects from this massive and intense chemo protocol.  Mucositis after the even rounds?  Yes.  But no vomiting or nausea and after my first 2 rounds, less fatigue and muscle weakness.

In scrolling through the blogs, I have not yet had any hits for Stage 4 DLBCL treated with Hyper CVAD or with CNS involvement so I created an account and posted on Blog for a Cure.  Now that I have broken through this emotional wall, I am going to have to measure out my participation.  I can easily see spending another hospital day reading these very inspirational and informative blogs.

"I Spy" Joe leaving the hospital yesterday afternoon!

In non-internet news from the Oncology floor, my kidneys are once again working wonders!  Monday's mega dose of methetrexate is being purged at a phenomenal rate.  Last night, my blood level shows 1.3 micromolar (1 x 10 to the -7 M) and I need to go down to 0.05 ("undetectable") for discharge.  I am so close and have purged so quickly that they are actually going to draw my blood earlier this afternoon with the thought that I might go home in late afternoon or early evening!  HURRAH!  Go kidneys!  On the slightly negative side, my blood levels are already trending downward and my potassium has been declining in response to the methotrexatre.  Yesterday, I took supplemental potassium but my level has continued to go down and today I am taking 4 times the level of potassium to try to level it off.  Neither piece of blood level news counters the good news about my methotrexate level and I should be going home soon - today or tomorrow at the latest!

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Just finished listening to an amazing Fresh Air interview recommended on a blog I read yesterday.  Terry talks with an oncologist about his book:  The Emperor of All Maladies: A Biography of Cancer.  I've already reserved it at the library :)  

Successful Lobbying for a Decent Sleep ...

Tuesday - October 9, 2012

... despite defending against the effects of kidney-damaging high-dose methotrexate.  Q:  How do you protect precious kidneys against the potential "vicious cycle" of mega-doses of kidney-tartgeting chemotherapy?  A:  You run continuous high-volume infusions of protective liquids, drink copious amounts of water, and make frequent trips to the bathroom.  Despite the disruption of regular (but quick) bathroom visits, I enjoyed a decent night's sleep thanks to an early evening, firm but friendly sleep-optimization conversation with my familiar night RN and clear but smiling body language of covering my eyes with my arm and remaining silent when my care partner tried (repeatedly) to chat me up during vitals in the wee hours. Not a great sleep, but decent.  I'll take it  :)

We just had our morning bedside shift-change RN meeting and all 5 women were familiar faces (2 are trainees but I even know these women from previous roles).  One benefit of 8 hospitalizations on the same floor is that you really get to know all of the players.  The physicians change somewhat.  The residents and interns rotate out to go to a different department or clinic and the attendings take weekly turns monitoring the floor.  I have the greatest continuity among the fellows who like the RNs and Care Partners provide a comforting degree of familiarity and connection. 

My Leafy View (+ My Knockout Chemo Dose)

Monday - October 8, 2012

Hospitalization #11 is underway!  My platelets came in at 119 and I quickly made my way upstairs to the Adult Oncology floor.  However, in a true change of scenery, I am on a completely different side of the building, looking west.  My large window overlooks some large leafy city trees, older brick buildings carefully repurposed by VCU, and the Confederate White House now used as the "Museum of the Confederacy."   I love the vitality and action of this new-to-me street view.  Ambulances pull along the "no parking" side of the street and the EMTs rush back into the hospital, later re-emerging with coffee, bags of food, and - once - a balloon.  Cars using the 4 precious parking spaces on the right hand side of the street are sometimes left with their hazards on, a plea perhaps to convey urgency and to ignore the neglected meter.  One truck had its hazards on for well over an hour and a security guard finally walked up to it and placed a note under the windshield wiper (what did it say?).  And, of course, with my Yankee bent and my "the war lasted 4 years, you lost, get over it" view, I am fascinated watching the tour groups exit the Museum of the Confederacy.  

I'm all settled into my space, familiar RN Allison has accessed both sides of my port, and the attending physician has talked to me about the "novelty" of this high-dose methotrexate protocol and how useful it should prove in targeting my Central Nervous System (CNS) involvement (now I understand that orbits and sinuses are considered part of CNS).  Now I am waiting for the pharmacy to deliver the chemotherapy and to get this treatment started.  I'm ready.

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YEAH!  The exercise bike has found a new home in room 114!
BOO! Has the hospital server blocked Facebook?  Neither the computer nor the iPad can access it.

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The chemo was hung at 4:30 - not too bad, 6 hours after getting upstairs.  The methotrexate dosage - as billed - is indeed HIGH:  6.4 grams infused over 4 hours.  In contrast, in my Hyper-CVAD even cycles, I received 1 gram of methotrexate infused over a 24 hour period.  This chemo is a knock out ... for any possible lymphoma lurking in my central nervous system I hope ... and not for me  :)   Actually, the two pharmacists and the four (yes, count 'em, FOUR) oncologists who have been in to consult with me today all state that side effects will be minimal despite this epic dosage.  In fact, the mucositis tied to my even Hyper-CVAD cycles will not be repeated here with such intensity since the main causal factor in that affliction is the cytarabine, not the methotrexate.

As for Facebook, I am back up (at least for the time being) after asking my nurse what was going on.  30 minutes after my inquiry - voila!  It finally loaded!  Being blocked from Words with Friends and my NYT Crosswords Subscription is a drag but a Facebook block?  No way.

In the Warmth of the Fireplace ...

Sunday - October 7, 2012

... the hounds curl up in their dog beds and BASK!  A happy Italian Greyhound is a warm / hot / cooked Italian Greyhound....  On this first truly nippy morning of autumn, the fireplace is a welcome spot for both dogs and humans.  Joe and I are both on our iPads enjoying the warmth and the peace of a quiet morning at home.  After awakening to the comfort of the sound of rain and a cool crisp breeze through the open windows, I am preparing for my last day before tomorrow's expected (11th) hospitalization.  I will miss my access to fresh air!  Today's agenda (because I do indeed love a good to-do list) includes finishing up a Coursera class paper on the effects of the 14th century plague pandemic, tackling Megan's* closet (part 5?), enjoying some sewing machine time while watching football, and meeting Gina downtown for lunch.

So today is my last day for a while to revel in feeling perfectly, absolutely, blissfully fine!  A good starting point for an infusion of high-dose methotrexate?  Lest we all forget the toxicity of this poison ....

"Methotrexate is eliminated primarily unchanged in the urine.  This means that a patient’s renal function is a critical factor in predicting the magnitude and duration of methotrexate levels following high-dose administration. Very high levels of methotrexate may lead to precipitation of the drug in the renal tubules.  This can cause methotrexate-induced nephrotoxicity, with increased serum creatinine and the potential for acute renal failure. Once methotrexate-induced nephrotoxicity occurs, a vicious cycle is initiated.  Nephrotoxicity with impaired renal function leads to even more delayed clearance of methotrexate, with further impairment of renal function and high sustained methotrexate levels in the blood."

My kidneys have performed admirably and with gusto in the past.  Let's all wish them well as they take on the challenge of a higher dose of this powerful chemo drug.  Side note: "vicious cycle" is not a phrase I come across often in medical articles. Hmmmm.... Not sure I like it ....

* For the record, "Megan's closet" is generally a storage area and not filled with the detritus of M's pre-Davis, CA living.

Feeling (a wee bit) Blue

Saturday - October 6, 2012

Our "an" atop some blues

Not navy blue or royal blue but maybe sky blue or robin's egg blue.  Just a bit blue despite the fabulous autumn weather and the bright, crisp sunshine.  I'm happy to realize that this less-than-cheery state is the exception rather than the norm and I suppose having the blues is inevitable when you are in the midst of treatment for stage 4 cancer.  Nonetheless, I would like to redecorate my approach to the day and find a sunnier emotional slant. 

And the best way to combat the blues is with action!  I have a sneaking suspicion that last night's task of burning photo files onto CDs might be the origin point for my aquamarine state so today I am staying away from memory lane.  Instead, I may plow back into Megan's closet or once more break out the sewing machine for instant gratification and sense of accomplishment.  My physical state remains strong so walking the hounds down to the river (for a third day in a row!) is a must.  That outing is a guaranteed stimulus.  A cure-all.

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Well, I may have been wrong about avoiding memory lane.  A high school friend just sent me a movie made during our senior year, essentially a video yearbook full of cameos of peers and teachers.  What a fabulous surprise! 

A Relaxing Visit with Sally

Friday - October 5, 2012

Forget sweating in the closets and digging through boxes, today was a day for laying back and relaxing a bit with Sally!  We enjoyed that beautiful familiar walk with the hounds down to the York River dock and watched a boat working the crab (?) pots close to our shore.  Then after going through Sally's recently discovered collection of Dad's old slides, we ventured out to Second Street for an al fresco lunch.  Typically, while feasting on that food, we were thinking about more food and made plans to go to Peter Chang for authentic Chinese on her next trip up the interstate.  How lucky we are that Williamsburg offers such a broad and quality assortment of restaurants! I'm certainly taking advantage.

Closets and Coursera (+ a Return to our River Walks)

Thursday - October 4, 2012

Found and tossed....  Like a CV on floppy disks!

Another protective, hunker-down, homebound day.  I am taking advantage of my energy and degree of physical prowess by cleaning out closets and filling Goodwill, recycling, and trash bags.  Perhaps it's a bit of a purge ....

I am also totally enjoying my plunge into world history and filling in some considerable holes in my knowledge and understanding of South American events.  Thank goodness for Carolyn's discovery and suggestion of our history class on Coursera!  It is simply wonderful.

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The creek on one side ...

... and the York River on the other.

Our perfect Williamsburg walks are back on the agenda!

Counterintuitively Germaphobic

Wednesday - October 3, 2012

The calm before the storm

Yes, I am feeling the best I have since early morning December 28 on Seven Mile Beach, Grand Cayman.  Pretty amazing, yes?  Simply put, I am no longer feeling the effects of the DLBC lymphoma.  It's gone (as far as we can detect).  The chemo has been a success and my "complete response" is documented in my PET scan and my MRIs.  Part 1 of this cancer journey is a joyous, total success!  I am blessed and grateful.

So, why am I so nervous this week?  What is keeping me so spooked that I am hesitant to go to the supermarket?  Why opt for dining in rather than a trip out in the world for dinner?  I am feeling very, very gunshy about venturing outside and encountering germs (and other people).  Perhaps, this "found week" is so very precious and I am feeling so very good that I simply do not want to risk ... anything!  I understand intellectually that the odds of an early hospitalization due to a fever / infection are infinitesimally low yet I continue to worry that my temperature might elevate and then my "found week" will be brutally abbreviated.  It isn't logical, it's emotional.  I am glued to the house and its environs, making the most of this opportunity to clean out closets and to toss, sort, and organize.  I suppose I am a newly inaugurated germaphobe ... took me long enough :)

(Deliberately) Raising My Pulse

Tuesday - October 2, 2012

Yesterday's (3 hours + of) vitals confirmed that my pulse rate has definitely returned to a consistently lower, more manageable rate.  My 153 bpm peak of a few weeks ago seems to be firmly in the past and I feel less winded - and safer! - in moving around in general and even in ascending the stairs.  Now I am excited about getting outside with the hounds, walking around the neighborhood, and raising my pulse for a bit of long-neglected cardio.  My BMT physician emphasized cardio way back when in the beginning of the summer when I was in Hyper CVAD round #2 on the BMT Unit floor.  However, given that I was breathless just walking to the kitchen or frozen with leg fatigue as I tried to raise myself off the floor or couch, a cardio outing was not an area where I felt comfortable at all.  My focus during these many months has been on keeping my pulse down and under control.

With the conclusion of my "nasty" Hyper CVAD regimen, I have taken the hounds out solo without fear of becoming stranded with fatigue on the other side of our neighborhood or - even worse! - stumbling and falling down due to a loss of balance.  It's time to up the ante and go for multiple daily walks and maybe - just maybe - feel comfortable enough to take the dogs down on our old route to enjoy the glorious expanse of the York River.  Today on our morning walk, we encountered one glitch with my current physical state.  While the hounds and I were doing just fine at a steady pace, when a rain shower burst upon us, I realized quickly that there was simply no way that I could manage even the slowest of jogs to get my water-adverse Italian Greyhounds out of the rain.  Poor thin-coated Baxter looked at me plaintively yet there was no avoiding his becoming all spotty with raindrops.  Sadie just soldiered on, eyes forward.  We were all damp when we returned home but my pulse?  Still within reason  :)

Platelet Predictions? It's Lucky 53 - Megan wins!

Monday - October 1, 2012

Megan suggested that we start a pool and predict my platelet level in today's blood draw.  I need my  platelets to be at 35 in order for my (11th!!) hospital admission to stay on track for tomorrow.  While Megan and I put in a 50 and a 42 respectively, Joe put forward a 33 BUT said that with my numbers moving up and a hefty dose of goodwill, my hospital admission will still go ahead.  Now that's a bet with chutzpah.  I should know by early afternoon ....

In any case, I will be getting a Rituxan infusion today but NOT having a lumbar puncture for intrathecal chemotherapy.  Because the methotrexate penetrates the central nervous system, the high level of this week's methotrexate infusion makes the intrathecal treatment redundant and unnecessary.  I am more than happy to avoid another spinal tap  :)   Home by mid-afternoon!

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1:30 update:  Ah, waiting at Dalton ....  To quote Joseph, "I was counting on the fact that after dropping you off  2 hours ago, nothing would have happened".  Well, technically, the basics have happened; my port is accessed, blood was drawn, and my blood labs are back and it's only been 3 hours ....  Big BIG news however .... My platelets are in at 53 (Megan wins the pool!) but Dr. Perkins does not want to admit me for the high-dose methotrexate until my platelets are at 75.  So - surprisingly - my hospital admission has been delayed a week.  I don't need to return to Dalton for (wait for it folks, this is MORE BIG news) an ENTIRE WEEK!  Found time at home.  I am at a bit of a loss - but happy!

As for today, we are STILL waiting for a call from the infusion room, then my pre-meds, then wait for the pre-meds to kick in, then hope that the Rituxan is waiting and at hand, then 2 hours of Rituxan.  Joe has foraged an Au Bon Pain caprese sandwich for me and is now off on a walk....  I remain all ears waiting for my name to be called!  Forget DMV folks, these waits are epic.

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Home at 5:55.  What was I thinking writing "Home by mid-afternoon!"  That's just crazy-talk, Christine.