HOME!!!

An Oncologist filling in for my regular doctor walked in this am and literally asked "Any reason you need to stay in hospital?"  

After almost 3 weeks more or less confined to a hospital room (and certainly only a small corner of the hospital) I didn't have to think one nanosecond.  Well YEAH!!!

Abbreviated criteria for discharge are: adequate white blood cell and platelet counts, no fever or infection, and ability to tolerate food.  They don't care much about anemia-red blood cells take much longer to make and if you are tired and somewhat easily out of breath, well too bad. Kind of goes with the territory.

Turns out my 13 day old bone marrow is up and running, and I can't tell you what a relief that is.  Life without a bone marrow simply doesn't exist.

Many stem cell transplant patients have to be fed by IV for some time, but I was fortunate to tolerate having my gi tract lining stripped away and still able to eat.

Stem cell transplantation is not a lot of fun; as the advertisement caveat goes: 'Don't try this at home'.

Can't tell you how wonderful it was to drive home and see fall leaves,  cars,  normal people, and sounds other than zillions of patient monitoring devices.  Heavenly.

Lots of fatigue, some nausea, and generally kinda weak, but being home makes up for a lot of stuff. 


How do you say thanks for something so profound as all of your support?  My best attempt:


My most sincere gratitude to you all for helping me run this gauntlet in pretty much record time! 

Phoenix rising

We all know the phoenix as a bird from ancient Greek mythology.  It was purported to have a 500 year life cycle, at the end of which it builds a nest of twigs and undergoes self immolation.  As the story goes, the bird is reduced to ashes, from which a new phoenix arises to live again.  The phoenix has come to represent rebirth and renewal in popular culture.

This seemed like a metaphor worthy of the following news flash:

I learned this morning that my white blood cell count has come off 'rock bottom' (ie zero) to a low but very cherished number.  The only source of those cells are the transplanted stem cells in the marrow-proof positive they are happy and busy working after returning home.  This gives an all new meaning to this rather pedestrian and plebeian term, and elevates home to an almost supernatural status (at least for me).

Criteria for release from hospital include a low but respectable neutrophil count, 2 days without fever (I still have some little spikes), and being able to manage generally (eating, mobility, etc.).  Sounds like Tuesday 11/1/11 (that date alone is a little cosmic) might be my departure date, if all goes well.  Around here it's best not to count your chickens until they are hatched, as bad stuff can crop up, but I'll knock on wood and hope for the best.

Finally I know how much your kind wishes, support, and prayers have done for me and my family.  It has turned a pretty nasty experience into just a challenge, albeit a big one.  I won't lie and say it was easy; it wasn't.  

What I know with absolute certainty is that you have all made a difference, and for that I am eternally grateful.

Voltaire

Francois-Marie Arouet (Pen name Voltaire) 1694-1778 as you all know was a French philosopher, playwright, and sage.  I mention him as the author of one of my favorite aphorisms:

'Medicine is the art of amusing the patient while nature cures the disease.'


At present the doctors and nurses are doing the amusing, and I think nature is at work, although there may be a work slow-down or something else holding stuff up.  A few medical issues that typically occur with stem cell transplants have put a crimp in my writing, but just so you know I haven't abandoned you, '...he's back'.

A sampling of some recent medical challenges:

•  FUO (fever of unknown origin)-negative blood cultures and clear chest Xray-treated with broad spectrum IV antibiotics around the clock
• Fungal infection of the tongue/throat (thrush or oral candidiasis for the medical types) that is actually pretty sore
• Gastrointestinal tract lining has effectively been shed (rapid turnover tissues are affected by chemotherapy to wipe out the bone marrow) with nausea, diarrhea, and a case of major tummy poorlies that is hard to describe but eliminates any interest in food or eating
• A platelet transfusion resulted in an allergic reaction that was just a little unnerving
• An itchy raised (papular) rash on back and chest that I would like to use a pitchfork to scratch (that isn't infective and likely from one of the four myelo-ablative 'medications')
• Fatigue-when blood counts bottom out, you become tired like you can't imagine-it seems like a supreme effort just to keep your eyes open, and you wind up snoozing for much of the day.

The good news: once you hit bottom, things start to improve and your bone marrow starts making blood cells in ~ 10 days.  At this point I have probably bottomed out.

You have likely surmised I've been enough under the weather to restrict my energy expenditures to matters directly related to getting better. 

 I appreciate your kind wishes, thoughts, and prayers and will be forever grateful for your support.

Thanks for being there.

T

Neutropenia, Thrombocytpenia, and Anemia

Neutrophil (White blood cell)

Platelets

Red blood cells

So-all you medical types that understand the title can just skip forward.  

For anyone for whom the title is a little obscure, the bone marrow makes three basic blood lines: white blood cells, red blood cells, and platelets.  There are many different types of white blood cells (neutrophils, lymphocytes, basophils, etc.) depending on their function (fighting infection primarily).  A common white blood cell known as a neutrophil is in the top photo with the purple segments.

Platelets are primarily the glue that causes hemorrhage to slow down, by forming a mini log jam at the site of bleeding.  Don't ask why, but a low platelet count in medicalese is 'thrombocytopenia'.  The center photo shows platelets clumping together and doing their job.

Finally you all know about red blood cells and their main function of transporting oxygen-they are in the bottom photo and you know anemia as the name for a decrease in red cells.

I have arrived near the bottom of the bone marrow devastation engendered by chemotherapy from 7-10 days ago.  White blood cell count (normally 4000-10,000) is 200; platelets (normally 150,000-400,000) are 33,000, and hematocrit (red blood cell count-usually 45 or so) is 29.

Another interesting phenomenon is the peeling away of the entire gastrointestinal tract lining.  This gives rise to some nasty nausea (compounded by the reduced blood counts) and diarrhea that I won't even mention in mixed company.

All in all, it has been a trying time for the last few days due to major league nausea.  Some meals you just can't even think about, and just give a pass.  Others you manage to get down a moderate amount of sustenance.  Intravenous feeding is available and may be used, depending on how things go.

Enough of the medical stuff.  It is always comforting to hear from you (read: the real outside world) and I always appreciate your kind messages, wishes, and prayers.

As a close friend said, this is an adventure, and we are just having to ride the wave.

Best wishes to all and thank you for being there for me and my family.

T

Cancer birthday

Stem cell transplant went smoothly Tue 10/18.  Having said that, there is a lot of preparation with standby emergency equipment and supplies (suction, oxygen, adrenaline, pretreatment with sedatives, antihistamines, IV steroids, etc. etc.) as there can be anaphylactic reactions even when receiving your own stem cells.

The little bag of cells (about 50cc) was infused over about 20 minutes mid-morning Tues 10/18 uneventfully, and evidently these cells find their way from the blood stream to their little bone marrow homes.  Incredible.   My Oncologist Dr. Kaplan confirmed the medical mystery: nobody knows how or why the stem cells make their way back to the bone marrow.  Well as long as they do...


Wound up snoozing most of the day-very fatigued and not quite sure why.  May be related to antihistamines and sedatives given prior to the transplant to reduce reactions to the preservatives and other stuff that occurs with the procedure.  There is also likely a significant physiologic reaction to the preservative DMSO, used to protect stem cells from freeze damage during storage.  

Blood counts will continue to drop over next 10 days or so before the bone marrow regeneration starts to take over.

Traditionally the day of stem cell infusion is considered your 'Cancer Birthday'.  There should really be no candle on the cake since in a year it should have one, but I didn't have the heart to show a birthday cake without a candle...

Thanks to all for wishes,  prayers, and continued support.

Best

T

Crossing the Rubicon

,

Everyone will recognize this as the Rubicon River in Northern Italy. Well maybe not everyone...

As you may already know, the phrase 'Crossing the Rubicon' originates with Julius Caesar's invasion of  Rome (January 10, 49 BC), after leading his army across the Rubicon River. Caesar was staying in the northern Italian city of Ravenna and he had a decision to make. Either he acquiesced to the Senate's command to stand down, or he moved southward to confront Pompey and plunge the Roman Republic into a bloody civil war. An ancient Roman law forbade any general from crossing the Rubicon River and entering Italy proper with a standing army, under penalty of treason.  This tiny stream would reveal Caesar's intentions and mark the 'point of no return'.

We get to the "point of no return" in dealing with difficult times.  There is a pivot point, just like the teeter-totter unbalancing, when we come to the inescapable conclusion that we can only go one way.   Until that inflection point has been reached, there is lots of room for dithering and pontificating.  The make or break moment is when the decision to go forward has been reached, and there is a definite psychological boost to making the leap and pressing forward.

Many of the big decisions in life involve passing a point of no return, and only in retrospect can we fully appreciate the gravity of our decisions and choice of direction in life.  As we mature we are able to see the way forward with greater clarity, and this may bolster our ability to shoulder the greater challenges faced as we mature.

Starting with the chemotherapy to 'condition' (read: 'destroy') your bone marrow and subsequent stem cell transplant to repopulate and renew it, one has clearly crossed a major line and the end of the current treatment is now in sight.  Somehow your bone marrow seems like a very, very central organ,  and it might seem unwise to monkey with it.  Oh well, such are the joys of chemotherapy.  Cancer-the gift that keeps on giving.

Thanks for emailing, calling,  or whatever.  It really helps to maintain direction and motivation, which are highly prized in this environment.

Best to all

T

Grim Determination

Winston Churchill giving his famous 'V' for victory sign.

Sir (having been knighted) Winston Leonard Spencer-Churchill was Prime Minister of Great Britain from May 1940 through the end of World War II.  His steadfast refusal to consider defeat, surrender or a compromise peace helped inspire British resistance, especially during the difficult early days of the War when Britain stood alone in its active opposition to Hitler.


By many measures and from many opinions, the German military machine should have defeated Great Britain during WWII.  Their army, air force, equipment, training, and leadership were arguably superior to the forces allied under Churchill.  The deciding factor was Churchill's steadfast conviction that Great Britain would not be defeated.  Period.  Closed quote.  Like what part about NO don't you understand??? 


He simply refused to ever consider the possibility that the German forces could be victorious.  Wasn't going to happen-not on his watch, and not while he was alive.  Talk about sticking by your guns.  The war resulted in the death of between 50 and 70 million people.  There simply had never been carnage of this scale in the recorded history of the planet.


The point of bringing up Sir Winston is to highlight and demonstrate the grim determination with which he doggedly pursued eventual victory over Hitler and the Nazi war machine.  


Bottom line: When facing an enemy (such as cancer), you must simply refuse to give up.

Just in case you think I escaped from the Oncology Unit, a picture of the nurses' station with them busy at work, to affirm my continued internment here :-)


Best wishes


T (also known as lymphomadude for you hipsters out there)

Settling in

Well, pretty much settled in with a couple of days down.  Some pics from hospital room for interest: top pic is Lifecycle (smuggled in from home) in foreground; teeny weeny Space Needle in background; middle is north view with Arnold Bldg left and Nordstrom Tower right and peekaboo view to Lake Union; bottom photo looking west with 2 Union Square to right (white top with flagpole) and a hint of Puget Sound.

Swedish Hospital has a terrific Oncology Unit.  Seattle Cancer Care Alliance including the Fred Hutchison Cancer Research Center gets a lot of press and is the place to go for complicated stem cell transplants.  Trust me on this: in medicine you want to avoid anything that has the word complicated in it.  At the risk of stating the obvious, these are riskier and less proven situations that are best if applied to someone else.  Don't get me wrong, if I had something termed complicated, the 'Hutch' as it is affectionately known is 'the place to be'.  Having said that, Swedish has really got their act together, and as someone with healthcare experience I am dutifully impressed by the facility, staff, organization, teamwork, etc.etc.

Anyway enough yakking-enjoy your collective lives and please don't get something complicated, OK?  The Hutch doesn't need the business, I assure you.

Thanks as always for your outpouring of support, caring, and prayers.

Thought of the day from dear friend DT: 'When failure is not an option, it is amazing how much more directed and focussed you become, and how success is a more achievable goal'

Onc Unit

The name kind of says it all, and just to remind the inmates (residents) that we are all immunocompromised, there is the bug 'full stop' sign.  Hope the bugs can read.

Interesting rhythm to the Oncology floor.  It is clear that some/many patients are quite sick, judging by the number of nurse calls we hear on the individual room 'dingers'.  I sort of feel badly calling the nurse when whatever I might need (like a medication taken at bedtime or an anti-nauseant that isn't super time critical) just doesn't seem to get anywhere near what I think of as urgent.

I haven't counted exactly, but the floor has ~ 30 rooms; with both private and semi-private. Capacity at present appears to be ~60% or so.  Typically a nurse shift seems to be 7am-7pm, and you guessed it, 7pm-7am; nurses seem to have 3-4 patients each for their shift.

I found out yesterday that the IV lines connecting me to a triple IV pump apparatus for chemo infusion will stay attached for the duration of my stay here (3+ weeks).  I'm getting pretty facile at unplugging the machine (to run on standby batteries) for a stroll in the hallway, bathroom visit, etc.  Nice little e-chemo-R2D2 like friend to accompany me wherever I go.

Talked my Oncologist into a Physical Therapy order for (my suggestion) 'Repair Body'-thought that should cover a lot of ground.  Hope PT can help combat muscle atrophy from too much hospital bed time.

BCNU (aka Carmustine) therapy began and ended yesterday; today starts combo Etoposide and Ara-C every 12 hours X 4 days; and the wrap-up at the end is the lovely Melphalan (that the Russians adapted from mustard gas-don't ask who they tested it on...).  Stem cells still supposed to return to their maker on 10/18.  It probably goes without saying that ALL chemo drugs, transfusions, and other meds such as anti-nauseants etc. are given by IV.

Enough for today-will look for interesting material to post tomorrow.

Best to all and thanks for your support and prayers.  They are clearly working!

T

The phone in the room is from the Triassic period and no messages can be left and there is no missed call display.  You can however leave a message at the 12 East nursing station @ 206 215-3412-how quaint.

Swedish Admission

By way of introduction to being admitted to Swedish Hospital, I am sending a pillow cover image from my daughter Tasha and SIL (son-in-law) Grant in Philadelphia.  The center caption really says it all-a very strong positive message that is echoed by all of my extended family and friends.

My home for the time being is Room 1242, 12 East Swedish Hospital, 747 Broadway, Seattle, WA 98122-4307.  Believe it or not, I have a direct phone line in the room: 206 215 3911 Chemotherapy with something called BCNU (also known as Carmustine) will start today, with Etoposide, Ara-C, and Melphalan to follow; each on a new day.

I was able to haul my exercise bike (Lifecycle) into the room, and it is situated near the window with a view north to the south part of Lake Union, the Space Needle, and a bit of Elliott Bay/Puget Sound. Hopefully I'll feel up to using it for something other than a huge paper weight. For the time being visiting is very limited due to the immunosuppressive effect of the chemotherapy, but I should be able to yak on the landline, use email, do video chat on Skype, or mobile yak by cell phone.  I'll try not to invade too many of your lives for too long during this internment, but please indulge me a little as a long-term hospital stay isn't exactly an experience you might relish or cherish.  

Kindest wishes to all and thanks for your caring and support!

Best