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

Into the 'Big House'

So: PET and CT scans show no active lymphoma-great news!

Now 'The Plan' is to enter Swedish Hospital (the 'Big House' in medical slang) 10/11 to have an autologous (using my own cells) stem cell transplant.  In brief there is a regimen of chemotherapy for ~ 5 days after admission that has the acronym BEAM.  You can google the drugs but suffice it to say that the goal is to rid the bone marrow of any residual (undetectable) cancer and give the best chance for long term remission.  One small detail of treatment is that your bone marrow is completely wiped out, hence the need for the stem cell transplant to repopulate it.  Much like reseeding a lawn after using Roundup (and no, Roundup isn't one of the BEAM drugs, but you get the idea...).

The actual transplant is scheduled for 10/18 and is dependent on the Puget Sound Blood Center (PSBC). There is much preparation needed for the day of transplantation, hence the work-back schedule to be admitted on 10/11.  PSBC did the original stem cell harvesting and all of the magic involved in giving the stem cells back to me.

Sounds like I may be reasonably human by Thanksgiving according to those in the know, so will look forward to recovering and getting on with this thing called life that has been a little on hold for several months.

Thanks for your kindness, prayers, and good Karma-we are doing well and heading into the home stretch!

Kindest wishes and many thanks to you all for the support that keeps me going!

T

PET CT

No-it's not for your cat or dog :-)

Oh, and yes, I did have combined PET and CT scans today, in case you were wondering.   For the academically inclined: see PET scan and CT scan.

For anyone wanting the 'Cliff Notes' version: PET scans use a radioactive substance (often a glucose molecule tagged with a radioactive isotope such as fluorine 18) that highlights metabolically active tissues, such as cancer.  CT scans use Xrays to provide a static anatomic picture of tissues (and tumors) that look like slices through the body in any of 3 dimensions. The scans together are used to help stage cancer (determine the extent of disease and response to treatment at a certain 'stage').

Sorry for all the build-up, but no results until Wed 9/28 Oncologist visit-will update asap after that.

As always thanks for your support and continued wishes and prayers.  Back soon...

T

Stay tuned:

Next phase is 'staging'-will have a PET scan on Monday 9/26 and update soon after that.

Best to all

T

Pico treatment file update

So in brief, had stem cell collection today and all went smoothly.  Normally they shoot for 10 million stem cells to allow for 2 transplants-apparently we pegged the meter and set a record: 135 million (no misprint).  So they have enough now-was able to have the hose in my neck taken out-it did feel a bit like someone shot a crossbow bolt and just happened to hit you there (cartoon style), but it is nice to be without it.

Interesting process the stem cell collection:read on if interested; skip to next paragraph if not-for those passengers continuing with us on this leg of flight XXX: your blood is run through a machine with a centrifuge and the nurse monitors the different fractions of the blood (red blood cell/white blood cell/platelet/plasma) and tries to hit the sweet spot by centering on the WBC fraction to maximize stem cell collection.  Needless to say, some red cells and platelets 'all go along for the ride' as Dylan says in 'Hurricane', but they mainly take stem cells.  Over 3 hours your entire blood volume passes through the apheresis machine four times (like 4 complete exchange transfusions).  Hematocrit for those interested started at 30; dropped to 26.  Normal is ~ 45 or so.  Platelets went from 71K to 40K (Normal is 150K-400K) and my Oncologist wanted to do a platelet transfusion before removing the big hose, but the interventional radiologist who inserted it said no problem and just removed it.  I have been banned from playing with sharp objects for 24 hours (no kidding).

Anyhow I was able to say goodbye to my friends (2 surprisingly little bags of stem cells-like little change purses-a light salmon color) on their way to the blood bank to be further sorted and then frozen for later use.  They plan on potentially 2 stem cell transplants-one in the not too distant future, and another hopefully in the very very distant future.  I'm hoping not for, oh, say maybe 30 years or so.   Just have to go back to have blood work checked tomorrow, and if OK won't be back for another week +.  Will update later; no need to hold your breath.

Hope to catch up with many of you and as always I appreciate your unwavering support

Toby

Nano Treatment Update

Summary: daily blood tests to see if CD34 count is high enough to do stem cell harvest.

Translation/interpretation: Oncologist and stem cell nurse are monitoring the stem cell count in my peripheral blood to determine when they can store enough to do a stem cell transplant now and have enough in reserve for another one later on.

A stem cell transplant is the new version of a bone marrow transplant.  Stem cells develop into the 3 major blood components: red blood cells, white blood cells, and platelets.  The idea is: harvest stem cells, then blast the bone marrow with a different chemotherapy that kills as many remaining cancer cells as possible.  The chemo tends to wipe out the normal marrow, and this would be fatal if bone marrow reconstitution with a stem cell transplant were not available.

Original bone marrow transplants required stem cells to be taken directly from the marrow, which frankly is not a lot of fun for the patient.  For the last dozen years or so, Swedish Cancer Institute has been doing autologous (using your own stem cells) transplant procedures in lieu of bone marrow transplantation, with stem cells harvested from peripheral blood.  A special IV catheter is inserted in the right side of the neck (into the internal jugular vein if you really want to know) and your blood is passed through an apheresis machine to collect the stem cells.

Tentatively I will have a temporary pheresis catheter inserted today, get a dose of Mozobil tonight to improve stem cell release, and start harvesting tomorrow am.

Will keep you all posted and send an email with a copy of this post

Kind wishes

T

This is nuts

I have to admit, this is one of my favorite movies.  Vincent (John Travolta) and Jules (Samuel L Jackson) as lieutenants of Marsellus Wallace-big time LA criminal persona.  Butch the boxer (Bruce Willis) who instead of throwing a fight that Marsellus has bet on, he kills the opponent;   Marsellus's gf (Uma Thurman) overdosing on a dinner outing with Vincent escorting her while Marsellus is busy; Vincent and Jules visiting some ne'er do well small time criminal associates of Marsellus who are cheating him and receive gun barrel justice; homosexual assault on Marsellus and final outcome with Butch finding redemption after the thrown fight wasn't-you get the picture.  It is worth watching or re-watching if you are at all entertained by total and completely random chaos.


What has this got to do with the blog, you might reasonably wonder... Well recently I felt a bit like this-kinda crazy.  In fact my family and close friends were only too aware that an alien brain abduction had taken place. Suddenly the person they have known as relatively stable is a total wing nut.  Constantly fussing with everything imaginable; argumentative to the point of pugnacity; like the motor that won't idle and sounds like it might explode.

Ever feel like you are losing your mind?  We all say this as a figure of speech and usually refer to a particularly difficult and taxing time.  If you ever (and I don't wish this on anyone) really feel deep down that you are losing your marbles, trust me-it is terrifying. Feels like falling into a bottomless hole without any way to stop yourself.

Don't know if it was due to dexamethasone (a prednisone analog) or what.  It seems to have subsided, but for a while I needed adult supervision to venture to the QFC for a quart of milk.

Anyway here is an update after about a half dozen revisions (Friday 9/2) from the Swedish Cancer Institute:

Go in for injections of neupogen for next 4 days-this releases more white blood cells from the bone marrow-see Neupogen.  May need additional injections of Mozobil, each of which would buy a small car.

On the 4th day I have a large external catheter inserted into my right external jugular vein- the size is to accommodate both in and out ports.  Blood is run into an Apheresis machine that collects stem cells and later freezes them for storage. I will receive a transfusion of these stem cells after a huge dose of  chemotherapy (different than the previous chemo) in an effort to any residual malignant cells in the bone marrow.  Unfortunately this treatment pretty much wipes out the rest of the bone marrow, and transfusions of red blood cells and platelets may be required,  in addition to waiting for your white blood cell count to be adequate to mix with people harboring nasty viruses.

Tentatively entry into the hospital for the stem cell transplant above will occur sometime in late September/early October with an estimated confinement of ~ 1 month or so.  Don't know anything specific about visiting, but I will have wifi access and cell phone and will probably be reaching out to you all from my seclusion.  Will post updates as they become available.

Thanks for all your heartfelt wishes and prayers.  Tony-I want to put a special word in here for you-friends like you and family make this whole thing not only tolerable but add special meaning and significance to life-simply put it helps cancer patients focus on why we must persevere.  The reason: for those who have stood by us during our trial-and I feel an awesome responsibility to never let down my supporting friends and family.

I appreciate all your caring and well wishes.