Next Stop, The Penthouse!

The Robert H. Loooooorie Comprehensive Cancer Center is on the top (21st) Floor of the Galter Pavilion at Northwestern Memorial Hospital.  The hospital is split into two towers, Galter and Feinberg.  Lovely (large!) painted pictures of The Galters and The Feinbergs grace the lobby areas of both, and I am prone to wonder..."geez, how much were you people worth that you gave THIS MUCH DAMN MONEY to Northwestern to get naming rights?!"  Seriously, we are talking large coinage here, people.  I also wonder, as a genetically engineered salesperson, how that sale got pitched and closed.  I then usually inhale, breathe a sigh of contentedness, exhale slowly, and proceed with my smug feeling that this medical facility is better than any other in Chicago, and for the most part, anywhere in the world.  LIKE I want to go to Houston?  ick.

Lurie Waiting Room~West

Lurie Waiting Room~North

Steve had a clinic appointment today, and this was truly a day of phenomenally good karma.  Left the house later than planned, got there on time.  NO backup to make the left turn from Fairbanks onto Huron (no CTA #3 King Drive bus raging toward me, nor 3 or more stop light cycles).  Pulled into the parking garage, got a SWEET spot on 2 (pedway level to the hospital) during peak parking times.  A gift from the gods, NO ONE got into our elevator.....mind you...when Steve was SO, SO sick, we would have coughing, oozing, gross people wedge their bodies in the elevator car.  Sometimes Steve held his breath.  Sometimes he wore a mask.  Today we were like urban cowboys, wooooooooo, express to 21, ride that germ-free pony!  He was called into the lab for his draw quickly, then called into Oncology for his appointment FIVE MINUTES EARLY!  That would be versus one to two hours late.  Often.  The waiting room felt empty, and that was nice!

Today:  It's all good.  Both our APN, Donna G. (who admitted to Green Bay Packer family lineage today) and Dr. Altman were THRILLED with Steve's looks, labs, and progress.  He gained almost 12 pounds in 3 weeks.  His face is filling out, and he is wearing clothes other than his "sick clothes" which were reminding me of old people/nursing home something-spilled-on-the-front-stinky-oily-cheesy-guy stuff.  Vitals are awesome, and we are grateful.  

There have been very wide swings in lab results for many months.  We can have home health (ACL/Christ) give us one number, Lurie (21-Galter onsite) another, and NW Hospital Labs yet another.  So Monday's WBCs (ACL) were 2.9 with ANC of 1.9.  Today at Lurie he was 0.9 with ANCs of 0.4?  Seriously?  That is just jacked up.  So Altman plays her cards as she feels them, and we feel the ACL numbers were correct from Monday.  Spleen measures the same 8-9cms.  Check out Steve's binder that gets hauled from appointment to appointment. -->  America, you've *got* to support electronic medical records, PLEASE!

Altman is backing down on Steve's Tacrolimus to ONCE daily (0.2ml) instead of x2 , and we will monitor for any GvHD symptoms as he gratefully and hopefully ends his anti-rejection medication.  Dr. Altman is complimenting that with a bump to daily of Steve's Neupogen, or "G," which sounds so hip, injections.  We have 3 syringes left, and our refill is $10,000 retail.  I wish I could tell you that was made up.  Tonight I gave him a shot that really hurt him, and it made me feel so badly.  I hate giving the shots, and tomorrow I will ask our home health nurse for some tips.

One of the many things I wanted to do with Steve, after our trying times, was to have some "pub grub" at Timothy's O'Toole's Bar & Restaurant which is a block south of the hospital.  My sister rescued me from Prentice one day for a so-needed break and I knew Steve would love the joint.  Today we got to do just that, and he ate like a pig.  Best part?  On the way back to the parking garage we ran into one of his Prentice Oncology nurses, and we had a chemo homecoming on the sidewalk!  It's an absolutely amazing experience to catch up with someone who was (and IS!) dedicated to your health and life, and just chat up the forward moving vibe.

The Green Bay Packers last went to the Super Bowl in 1997.  I was pregnant with our son, Kevin, at the time.  He was born on June 11, same birthday as Vince Lombardi.  It is Steve's destiny to live to see the Packers play for the Super Bowl again.   Enjoy Steve's moment of dream bliss at Lambeau Field in the dang Club Seats.....

Steady As He Goes

No news is definitely good news when it comes to cancer.  Steve continues to improve, and we are hopeful and grateful for the little victories and advances in his health.

We are on a 3 week visit schedule to the Robert H. Lurie Cancer Center/Clinic.  Dr. Altman wants us to check in by phone weekly,  just to touch base with her patient.  She decreased his Tacrolimus again today.  He is taking 0.2ml  x2 daily, which is about the amount of vermouth in a dry martini.  I give him a 480mcg injection of Neupogen every other night.   As of this week, home health only comes twice a week for assessments and a CBC and chem panel draw.  Steve still has his triple-lumen PICC line.  We hang a 500ml magnesium IV rider twice a week for sport.  His hemoglobin this morning was 6.8, which is when Northwestern yells, "BINGO" and he takes blood.  He has a standing appointment on Friday mornings at Christ Hospital for two bags of red cells.  If he doesn't need it, we cancel the appointment.  Here's a photo of "The World's Most Expensive Advent Calendar."  Loading up for the week ahead, pills are only twice a day now, at 10 & 10.  Much easier than four times a day!

Last weekend he was physically able to drive round-trip to Madison, Wisconsin.  We took our daughter back to college and spent a night in a hotel for the first time since April of last year.  We were also able to enjoy a wonderful dinner with our friends Gary and Donna Harrison, and the Packers won.  Steve was inhaling appetizers and fried shrimp while the restaurant crowd cheered for the green and gold.  He enjoyed half a glass of Spotted Cow beer, and I helped him by finishing it, immediately after my two glasses of wine.  It will be interesting to see what his weight is next week.  I know mine is up.

Yesterday Steve got his first post-chemo haircut, and the stylist didn't charge him, wasn't that sweet?  We celebrated the occasion with dinner at a nice restaurant in town that he had not been to yet due to his illness.   We ate well and brought home leftovers.  He grazes constantly through the day.

We are expecting extremely cold weather the next day or two, and the good news is that he is not nearly as cold all the time, not layering his clothes and covering up in the chair.  His energy level is markedly increased, and he even puttered in the garage for a while today.

Another wonderful thing we have learned through this experience is that people world-wide are reading this blog, from South Africa to Alaska.  AMAZING.  A big hello to all our new friends in Spain!!!  Blogger has statistics I can follow, and the only thing more fun than seeing all this activity from all these countries is that the MAJORITY of viewers are reading from a Mac, not a PC.  With that in mind, a most heartfelt GET WELL SOON to my former boss, Steve Jobs.  We're pulling for you at the Reppen house. 

Less is More!

We are just in from our bi-weekly clinic at Northwestern and have some great news to share.  As always, we are cautiously optimistic and don't want to get too far ahead of ourselves emotionally.

Steve's mouth absess was cause for a bit of attention after my last post.  We were asked to have it assessed, and were allowed to seek out help with our own (local) dental experts.  Our (always!) wonderful Dr. Steve Heaney took us right in on Tuesday of last week and determined it was a bacterial infection, and that the wisdom tooth was most likely fine.  Steve was already responding to the penicillin, so that, too, was good.  Dr. Altman ordered up Neupogen injections as a backup plan to the antibiotic.  That $10,000 of medicine was on chill in the fridge since late September.  I had only jabbed him once back then, so I had to remember how to stab the poor guy, not too fast, not the same spot, pinch up...reminds me of learning to golf.  Wine helps.  

Neupogen is also what Mary needed to take to prepare her body for her stem cell donation.  She injected herself.  Here's a lil copy and paste from an NIH site regarding Neupogen:

Why is this medication prescribed?

Filgrastim is used to decrease the chance of infection in people who have certain types of cancer and are receiving chemotherapy medications that may decrease the number of neutrophils (a type of blood cell needed to fight infection), in people who are undergoing bone marrow transplants, and in people who have severe chronic neutropenia (condition in which there are a low number of neutrophils in the blood). Filgrastim is also used to prepare the blood for leukapheresis (a treatment in which certain blood cells are removed from the body and then returned to the body following chemotherapy). Filgrastim is in a class of medications called colony-stimulating factors. It works by helping the body make more neutrophils.

Since Steve's white count was NOT going up, it was going down and was starting to cause puzzlement and concern.   No immune system, risk of infection, not good.  Giving him Neupogen can cause the spleen to enlarge, so Dr. Altman played this card earlier than planned, if at all.  We began daily injections on December 28.   It worked.

Steve's white cell count on January 1 was 0.6.  On Monday, January 3 it was 1.6, and today it was 3.9!!  His ANCs (absolute neutrophils) are 1.7, which are Olympian!  Now he will get a shot every other day, we are seeing if his body kicks in or if this nice plump number is artificially high.  His hemoglobin is in the high 6's; he has a standing appointment every Friday morning at Christ Hospital for a fill-up.  Platelets are good in the 70's.  Here's the kicker:  That damn spleen got smaller!!!!  It now measures 8cm, versus 11cm just 6-8 weeks ago.  I would love to know the measurement from his April admission, probably a meter!  He laughed AT me when Dr. Altman said 8cm, so I quickly asked when his splenectomy surgical consultation would occur.  Dirty looks were exchanged, and Dr. Altman got out of the exam room before we came to blows.  She will schedule a consult after he is done with his Tacrolimus (anti-rejection drug).  His weight, with jeans, a heavy hoodie, and running shoes, is still only 148 pounds. 

More good news is that we are eliminating one of his "Day 1" drugs, a prophylactic antibiotic (Avelox/moxifloxacin), as well as the penicillin.  Another drug (Ursodiol) has gone from x3 daily to twice, and his Tacro was dropped to 0.6ml from 0.8ml.  I got in the house and, like a mad scientist, rearranged his med schedule and "advent calendar" of drugs.  We are also extending out our visits to the Hematology/Oncology clinic at Northwestern's Lurie to every THREE weeks, hooray!

Thanks for all your positive thoughts, prayers, and juju.  Please send some the way of my online friend, Greg Dymerski, who is my inspiration for this blog.  Greg is also an ALL patient in the Pacific Northwest, and he has had a set-back in his recovery.  You can follow and encourage Greg by following his blog, "The Long and Winding Road."  The link is in my bio.

Peazzz out!