2:30 Tuesday, June 7, 2011

Well, all that prayin' and finger-crossin' seems to be working --- so far this is the most number of days Ed has made it past chemo without having to go back into the hospital.  We're at 5 and counting.....  We see Dr. Menco on Thursday for blood work to check his counts and for another dose of Rituxan as they really pull out all the stops to get him ready for the stem cell procedure.

We spent the better part of yesterday down at UCLA signing consent forms, meeting with Dr. de Vos and met many of the people on the transplant team.  We toured the phersesis unit where they will collect the stem cells and saw the very sophisticated machinery that does that job.  We saw the surgical unit where his chest catheter will be placed next Tuesday morning just prior to the beginning of the collection and we toured the Tiverton House where we will be staying after his discharge in July until he is stable enough to go further away from the hospital.  We are going to stay overnight there just one night next week to get a feel for it since we have to make trips to UCLA on both Monday afternoon and then again Tuesday morning.  We have booked the Conrad Hilton suite in the hotel, which seems very nice and is right in the heart of Westwood and close to lots of restaurants and markets, shopping, etc.  They have a free shuttle back and forth the 3 blocks to the hospital that runs from 5 AM to 9 PM, so that will help with the frequent visits for transfusions and lab work in the period immediately after his discharge.  The neighborhood is beautiful and the campus will be quiet for summer so it should be a nice place to take short walks when he's feeling up to it.

It's coming up pretty fast and we got lots of information the past few days.  We've been able to speak to some people who have been through a stem cell transplant and have them share some of their perspective and experience from a patient side.  There seems to be a whole gamut of experiences and each person had a different tale to tell, but all have made it successfully to the other side, obviously!  Some have spoken of the frustration & loneliness of being hospitalized for such a long period - Ed already has wrestled that alligator and knows it well, so I think he's pretty prepared.  Most of the people we've spoken to have been diagnosed with different various lymphomas - we've only spoken to one person who actually has mantle cell lymphoma, but she s doing fine after receiving amazing care from her husband through the ordeal.  She is in her 70s and that was very encouraging.

Dr. de Vos did have a long chat with Ed yesterday about post-transplant activities.  He said for Ed not to even THINK about coming back to work for 3 months and even then, he can't do any hands on plumbing for several more months.  Ed must also especially protect himself from exposure to  dusty, weedy, dirt or digging in any kind of dirt because of the high risk of pulmonary infections.  One of the chemos that he will receive as a conditioning treatment before the transplant has a lung damaging side effect that will make him very susceptible to respiratory infections, which the doctor warned are very hard to cure.  Also, he will remain extremely sun-sensitive from this point on and will need to wear protective clothing in the sun to avoid developing melanoma, etc.  No more cutting weeds and trees at the lakehouse and frying all day in the boats!  We are going to collectively force him into some self-care activities and I'm sure it will take a whole committee!    I'll probably set up a registration table for volunteers soon after we arrive home.  Its certainly a job bigger than me!

Meanwhile, we are home these next few days and I'm giving Ed his daily Neupogen injections. Luckily, there doesn't seem to be much of a black market for Neupogen, or I'd have an armed guard posted outside of our refrigerator.  When we got the 4 boxes of pre-filled syringes last Friday, the receipt in the brown paper bag from the UCLA pharmacy was for $12,439.80.    Each syringe has about one-sixteenth of a teaspoon in it so I always wear my glasses to make sure I don't waste any as I transfer it.  So THAT'S how Amgen keeps all the lights burning in that giant building that we can see from across our backyard! 

Anyway, the information has been overwhelming, the numbers staggering, but the gratitude humbling at how lucky we are to live in these times with so much at our disposal and the resources we enjoy.  So many others have gone before with so much less and paved the way by participating in clinical trials, toughing through the treatments without all the comfort drugs and kept going when I'm sure they wanted to give up.  I strive each day to keep the blessings remembered to help me find a gentle place in this chaos.  Those of you who know Ed realize that gentle is not what he's looking for here, the chaos suits him just fine.  But hopefully we'll both find what we need through the process and come out changed for the better. 

In the next few days I will post the address for UCLA and Tiverton House where Ed will be able to get cards (just not during the isolation period) throughout the process and once I'm set up in the room, the blog will get more attention since I won't be running around so much and we'll be more confined.    I will also let you know about visitors once we move to Tiverton House.  Perhaps we can meet for coffee or dinner in Westwood sometimes when we need a little company and a change of faces. 

Two more days until my youngest graduates from high school!  What a milestone for him and a sigh with some relaxed shoulders for me.  I'm looking forward to seeing my whole family together to celebrate him on Sunday -- I've missed them so much these past months as my focus has been so narrowed.  My grandkids will certainly provide some exhuberance and heartbursting joy to the day. 

Kristin's birthday is this weekend as well, so there will undoubtedly be some Engelker roof-raising as she turns 27!  It's nice for Ed to be home to celebrate these events and get a little taste of summer before the transplant.  I'll let you know how it all goes in a few days.  Meanwhile, enjoy the warming weather, love eachother and be joyful. 

Love,
Liz