Arrived at the National Cancer Institute   September 28th, 2011

Tuesday: Starting with a restless and mostly sleepless night, I arrived in Bethesda around the middle of the day, and checked in my room in the 3NW immunotherapy wing of the Hatfield Building, greeting all the fabulous nurses I have come to know from my prior stay. After unpacking, I had a chest X-Ray, an EKG, and blood work done. All look good!

My platelets, which had dropped to a level of 30 last week were up to a healthy 130, which resulted in a high five with the doctor as we celebrated, albeit breifly, that my blood counts were good enough to allow for the protocol to proceed unimpeded.

Linda and kids were here by late afternoon and settled into the adjacent Safra Lodge, which is quite a nice place. The Lodge is on the NIH campus, same as NCI, and has great facilities for families whose loved ones are being treated only a few hundred yards away. The rooms themselves are like regular hotel rooms, but there’s a huge shared kitchen area for the storage of food, cooking supplies, and leftovers, and there are a number of nooks which provide quiet space for stressed out family members, and in our case places our kids can work on school stuff.

Best of all, the Lodge is free – which is important in an area where the average hotel room night tends to run around $250/night. As one might imagine, the Lodge is quite heavily booked – up to two weeks in advance, so Linda and the kids will need to move to a regular hotel on October 2nd for four nights before moving back to the Lodge, unless those dates happen to free up for them. They are back until at least October 20th, my projected departure date.

I had expected Wednesday to be the start of chemotherapy, but that appears to be actually Thursday.

Instead, Wednesday provides a buffer day in case there’s a need for additional scans or labs, which will be determined after rounds in the morning.

We will have more details on the actual treatment process later today, probably.

Also, Linda has been set up with an account on this blog, and may post in my stead should I be feeling unwell enough to post on my own.


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5 Responses

September 28th, 2011 at 10:41
Cynde Says:


I was thinking of you yesterday thinking treatment had started. By now, I imagine you have started your next battle/journey. Glad the fam can be near by and be of support.

Please keep us posted on how everything is going. Hugs to you, Linda, Bas, and Krystyana….love you all….

(Imagining the sword slashing through all those cancer cells)…SWOOSH!!!!

September 28th, 2011 at 11:15
Barbara Leary Says:

Best wishes and lots of love and prayers to you and the family Jake! XXOO

September 28th, 2011 at 11:20
Meryl Says:

Jake..High five as well! Went out and bought those hiking shoes like you I think of you every step of the way! They are very comfy!
Hugs to you, Linda and the kids!
Meryl xxxxxxxooooooooooooo

September 28th, 2011 at 12:27
Steve Says:

The platelet news is good. The lodge sounds great. Hope Thurs. goes as well as possible and side effects are minimal. Rooting for you, partner. Onward to NED!

September 29th, 2011 at 00:25
dara Says:

Keep repeating the NED mantra!