Day +17: Oops!

Remember playing Chutes and Ladders as a kid? That's how I feel this morning, like I've slid down one of those dreaded "chutes" - after climbing the "ladders" so successfully. I spiked a fever last night (100.9) and ended up in the emergency room! I actually spent the entire night there (not recommended***). This is standard operating procedure for somebody in my situation - to check into ER. They did blood cultures and an X-ray and generally poked and prodded me all night. I got on some serious IV antibiotics. I'm fine now, and the fever is gone.

The Bone Marrow Transplant people came and visited me this morning (finally, people who understand me!) and, thankfully, decided to send me to the relative calm and safety of my home, rather than keeping me in the hospital. So I'm back home now and happily 'blogging' and soon to be 'napping' from my recliner - where I belong!



A night in the ER:



***OK, so I'm trying to keep a positive attitude about all this, and, to a person, the staff I've worked with "on the hill" are terrific. HOWEVER, spending the night in the ER was pretty close to torture. It started out OK actually: I was admitted immediately - valet parking even! - and put in a treatment room, but had to keep my mask on the whole time - since ER is where all the SICK PEOPLE are! We checked in about 8:00 PM, and, somewhere around 1:00 AM the nurse allowed that I would be spending the night in the hospital, but, they didn't have any "beds" available, so I was going to have to stay in the ER. Julie was able to go home a little after this - leaving around 1:30AM. Sometime later they found me a pillow. The nurse who came on shift at 6:00 AM thought to bring me a blanket. (Oh, and, thank god for noise canceling headphones because there was a woman screaming and complaining loudly every 10 minutes or so ALL night. She was obviously a chronic complainer, and staff were doing the best they could to keep her quiet. She was still going at it this morning - though she had clearly lost some energy and ability to project her voice - finally!) I was really OK though - and kept consoling myself by thinking: "at least I'm not the guy who's coming in on the LIFE FLIGHT HELICOPTERS" that kept landing outside... Oops, there I am slipping back into optimism again, sorry.

Anyway, suffice it to say that the ER is NOT the place you want to spend the night. They are good at patching people up and saving lives, but they are not really geared up for creature comforts and "healing". God bless em though if you need em!

Day + 16: Trending Upward

So after my upbeat report yesterday, I have to say that I'm realizing this is going to be a long, slow, process to complete recovery. I had a bit of a setback last night in the form of some fever spikes (something the hospital takes very seriously). Everything is fine this morning, but, it was a little scary, and, it served to remind us to "Respect the Process" and that I should do as I'm told.

While the overall trend has been, and continues to be, upward, I can't necessarily expect consistent improvement day to day. A hard lesson to learn sometimes. I continue to be upbeat and enthusiastic, but need to learn to temper that by listening to my body and doing what the doctor's tell me to.

Thanks everyone for you continued support - your comments and cards and emails - all are so great to get and help "keep me where the light is"....


YouTube video/audio of John Mayer's: Gravity

Day + 15: Morning has broken!

Today I actually went for a walk OUTSIDE for the first time in weeks. After a night of rain the sun appeared this morning and we took advantage and walked up to Grant Park in the sweet, clean air. Everything is in bloom right now - it is an over abundance of color and show. I am particularly happy to be "out" when the Lilacs are in bloom!



DETAILS DETAILS:
Now that I'm home, I am pretty much untethered from all the "support" that I was given in the hospital - except for a regimen of pills and an antibiotic "infusion" that is somewhat technical and tedious to deliver. I still have a PICC line in my arm, that is used to draw blood and infuse drugs and blood products. At the hospital, this was all administered by the professional nursing staff. At home, Julie and I are now in charge of this technology! A kaiser home health care nurse came over on Sunday and gave us detailed (she was here for an hour and a half!) instructions on how to set it up and deliver it. We have to do the infusion every 8 hours - which keeps me somewhat on a hospital like schedule (i.e. sleeping "through the night" is kind of a relative concept).

The other part of my new reality is visiting "the hill" every couple of days to get my blood drawn to analyze the progress of my recovery. I visit the infusion room at the hospital and sit in a giant chair and wait for the lab results to determine what it is I need in terms of support.

The good news so far: I went in for the first time today, and they sent me home because my counts were stable - so I didn't need any additional support. YEAH! (Actually, my white cell count had dropped since Sunday from 3.0 - 2.6, and my platelets and red cell counts haven't budged upward yet... but this was considered stable and normal, so they sent me home!).

I have a couple of other odd appts coming up as well: following up with my Radiation treatment team at Kaiser, and Dr. Lo, the Ophthalmologist who was treating my eyes with injection "therapy" early in my treatment.

So my life is still pretty securely tethered to the hospital and the drugs and the reality of my treatment. But, it is all so much easier to tolerate and accept while working from the comfort of my home and family (and my faithful dog who is always ready to nap right next to me no matter what!).

Day + 14 - Home Sweet Home

I'm home. I am overwhelmed in many ways and can't really adequately capture all the emotions I've been through in the last 24 hours. Mostly I am grateful - to all the people and processes that brought me safely here. I am especially grateful to the extraordinary effort of my "A" team that came through Saturday and so thoroughly and lovingly cleaned our house. It is so sparkly and clean and - safe - feeling. I can't thank you enough. And, kudos to the "garden" group who completely transformed the yard with new plantings, triming and a fresh bed of compost all around. You guys just overwhelm me with your love and support.

When I was released from OHSU yesterday, I was given a "duckbill" mask and told to wear it when outside - so my experience of much longed for "fresh air" was pretty compromised. Sunday was a perfect spring day - and leaving the hospital Kelly drove the scenic route - past the lilac garden at the bottom the hill in full, spectacular, peak plumage. We drove slowly through downtown and across the Steel Bridge - just to reacquaint myself with the streets and the city. And when we turned the corner to our block, I caught site of the lovely dogwood in front of our house - again - at its most perfect point of bloom-age - it was just lovely. The charge nurse who let me out warned me that I could go outside, but not to walk around if there were lawn mowing or yard work going on that might kick up dust or pollen. So, of course, EVERYONE on my block was out on this beautiful Sunday morning - mowing and doing yard work. So my arrival home was a little awkward and strange and overwhelming - I felt like I had to just duck into my house and hide.

So again, I am grateful and humbled and happy. Thanks so much to everyone who helped deliver me safely home.


Funny, I'm somehow reminded of a song:

This must be the place: Naive Melody

And another much loved version by Shawn Colvin

Day + 13 - Re Entry

So I'm actually going home ... TODAY! Day +13!

While I am of course excited and relieved and ready to land this spaceship safely back home, I'm also a little nervous about reentry into life on earth, with all its attendant "Gravity" and such.

My thanks again to the work crew who answered Julie's call - it is so nice to know that the house is well prepared for my return. I know that really gave Julie a big emotional lift to have your help.

And, I can't say enough about the staff and resources here at OHSU. I'll certainly miss my view of the lovely city and Ross Island and the Tram... but I have pictures and memories for that... and they pale in comparison to how sweet a bit of FRESH AIR will be!

Au Revoir Sky Lounge!

Day + 12 - I Shall Be Released...

I met with the doctor this morning, and, apparently, I shall be released....

... (wait for it)

.... any day now, like possibly as soon as TOMORROW - Sunday, Day +13!!

This is amazing news. My counts have continued to climb - doubling every day - so that I will likely be at the threshold for release tomorrow! I'll know first thing in the morning if I'm headed for release.

My daughter Kelly has been here since Thursday to visit me and support Julie on the home front. We've been playing lots of songs - in keeping with my musical life flashing before my eyes - and it totally cracked me up when she came up with I shall be released this evening.

Kelly also helped me transition into total cue ball plumage today by shearing what was left of my hair at the hospital today:




Today @ home:

In preparation for my return, Julie organized a work party at home to do a complete - literally ceiling to floor - cleaning of our house. So while I was lounging around in my sterile space up here on the hill, this intrepid group spent the morning preparing my next "bubble" to be a safe environment for my baby immune system to grow strong.


Thank you Thank you Thank you to everyone who participated today! I am so grateful for your outstanding efforts. I don't know what to say. You are truly my angels, and I can't thank you enough.

Day +11 Homeward Bound!

Homeward Bound (Another part of my musical life flashing before me - this was probably the first vinyl I ever owned... and now this song sounds particularly sweet to me).

First thing this morning my doctor brought the news that my counts have begun to climb. This is huge. It means that the procedure has actually "taken" and my body is producing its own cells again. Mark 2.0!

The actual numbers are rather small and insignificant, but the trend is in the right direction: Upward and onward!

If all goes well - meaning if I continue on this course for the next couple of days - it looks like I can go home on Monday - which would be day +14 - the earliest possible time frame that the Dr's have seen!

So I am happy, and humbled and full of gratitude for the process and the people who've got me here.

Blessings on you all!