First things first.  I need to apologize for not posting on this blog sooner.  I have never felt the need in the past to apologize for the frequency in which I posted updates, but this time is different.  I know that I have not posted at all since before I left the hospital and quite truthfully, I feel that has been unfair to you, my friends, family and strangers who have loved, cared and prayed for me (and my family) every step of this journey.  I know that for some of you this is the only place that you have access to updates and I haven’t provided you with those.  For that I am so sorry.  I have lots of reasons and excuses, some more valid than others.  Please accept my apologies and I’ll work harder at getting out posts on a more regular basis again. I am, as always, so thankful for your prayers and love for Jeff and I.  I have been overwhelmed by this whole BMT process and the love that has been poured out to us in so many practical and creative ways.

An Update: Well, I’ve been home for about 3.5 weeks now.  They say “there’s no place like home” and that has truly been the case for me.  I enjoyed being in my own house with my own food, furniture, family, Christmas decorations and the things I love surrounding me.

There have been a few blips in the road since being home though… on my first night home I came across my first snag… two medications to be taken at the same time, one with food and one on an empty stomach.  That discrepancy resulted in a late night call to the Nurse Supervisor and was cleared up the next morning, but was quick reminder that while I was at home, help was still just a phone call away.

The other “thorn in my flesh” was that I left the hospital with a bladder infection.  Some of you will have heard all about how terrible this infection was.  It was a virus and so not treated by antibiotics and at it’s very worst, had me running to the bathroom every 5 minutes.  The infection was all consuming from both a physical and emotional stand point.  And as you can imagine, it kept me up at night so my sleep was affected which also then played into the rest of my day.  And since I was running to the bathroom so frequently, I was unable to leave the house except for hospital visits.  Even then, we had to change our route to the hospital (we take Kingston Road now) and believe me when I tell you that I know where every bathroom in every fast food restaurant, gas station, coffee shop and Mom and Pop shop along that stretch of road.  At it’s worse, Jeff stopped three times on our trip to the hospital and Nathan commented “but Mommy, didn’t you just go to the bathroom?”  I think that the infection is gone (I say that with great hope) but it was miserable while it lasted.  I’m almost able to look back and laugh at the absurdity of the infection, but not quite yet.  I am able to recognize that had I been feeling better that I probably would have pushed myself too hard this Christmas season and I’m sure that would have resulted in other problems.

bmt News: I am scheduled in at PMH every Tuesday and Friday to be followed by blood work and a visit with one of the transplant team, either a nurse or a doctor.  So far, they are all pleased with how the transplant is working.  My blood counts are doing  what they are supposed to do and are coming up into normal ranges.  My liver function which was a concern in hospital is all but normal again and my eyes are no longer glowing yellow.  I am thankful for follow up appointments and that I am monitored so closely by the doctors and nurses who know this bmt stuff inside out.

Now that I’ve been home and I am beginning to feel like myself again (and no longer need to plan my outings around where the bathrooms are) I am starting to think about how I will head back out into the real world.  I’m not ready, of course, to jump right in but it was nice to enjoy dinner at a friends house last week and I also enjoyed my first play date with Nathan this morning.  I’m still tired a lot but I hope that some good solid nights of sleep will take care of that.  I had one 3 hour continual stretch of sleep last night, the longest since I’ve been home, but I also still have long periods of awakeness that are frustrating.  In general, I feel good, not great, not bad, just good.  I’m trying to be helpful around the house as much as I can when I’m able and I pass when it’s going to be too much.

I’m also trying to find a balance with Nathan as he can give me a real run for my money and tires me out.  We’ve read lots of stories together and had some really good snuggle time since I’ve been home.  I cherish those moments together b/c he’s never really been a cuddly fella.  It’s obvious to us that Nathan is glad that I’m home and has recently become concerned at bedtime about who is going to be at the house at night to watch him.  He told me the other night about how he didn’t want me to go into the hospital anymore because then I would miss him and he would miss me.  He’s right! And believe me, the hospital is the last place that I want to end up.

I’m still processing and internalizing what having had a bmt means.  I’m not sure how I thought I would feel and to be honest, it’s only since the (all consuming) bladder infection has started to go away that I have had the energy to even reflect on how I’m doing emotionally and physically.  There was one day when I thought to myself “what have we done?” and I needed to go back and remember all the ways in which Jeff and I made this decision and rest in the fact that we had made a good decision, the right decision.

I think that’s it for tonight.  I’ll write more as I’m at appointments and as I know more.  I still value your prayers in my healing.  I’m not out of the woods yet.  I’m still monitored because there is need to be monitored.  My first bone marrow test is at my Day +60 appointment and that’s coming up soon.  This will give the team a quick look into how the new marrow is working and combining with mine to achieve healing (or as the doctors say, a cure).

Thank you again for following along with us.  I have missed writing these updates and hearing from you.

With thanksgiving and joy, Heather

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