Day Three

Chemo, day three; Brian is sleeping a great deal today but otherwise not yet feeling the effects of the chemotherapy drugs. Everyone is different as the medical staff remind us. How and when he will react will be individual.
Its mid- afternoon now and I'm sitting in his darkened room. He didn't really sleep during the night, but now the crazy combination of sleeping meds, benedryl, (for blood product reactions), and the chemo premeds are all conspiring. Good, though,to sleep. He has so little mobility right now, with his catheter, and the accompanying big saline bags which are continuously running through his bladder, and two PICC lines, one in each arm--not to mention the additional IV site in his hand because they are always running out of access for something--antibiotics, TPN..... sleeping is a relief, for both of us. He will be disappointed that he missed lunch, though. He's on a full-fluid diet now, so there is soup getting cold and vanilla ice cream getting warm on the tray beside his bed. The return to eating simply these sorts of things has been a real pleasure in the midst of so much discomfort.
Another small pleasure has been the IPod that Louise sent. And, at last, getting the laptop up and running in his room here--a feat I accomplished just today!!-will be a huge lift. Its going to feel like XMas when he wakes up this afternoon.
My week has been one of catching my breath, and catching up on meals and sleep while things are relatively stable. I've also been plowing through things governmental and technological. Seems having acute leukemia isn't at first glance convincing to EI. The powers that be decided originally that 7 weeks was enough, and it took a call to our MP (and a single hour after two months of phone calls) to straighten things out. Thank you, Gary Lunn.
Thanks also to the Salt Spring group who arranged for me to have a hotel room during these chemo days. Its a great gift.
As well,the quilt made by many hands on SSI is a constant on Brian's bed now, and much appreciated.
I bought some books to read to Brian courtesy of Dwight; today we're reading essays by David Sedaris. Smile inducing.
At last, now, Brian will be able to read your postings, and maybe begin on the emails. Sorry so many people have gone unanswered. We so appreciate you all.
love,
Joanne

Next Wave

Joanne, again, its four am. I'm at a hotel, supposed to having a night's sleep. That part's not working but I've got the pleasure of listening to my children sleep. My heart is so full being in their incredible presence, missing them, and at this moment, missing Brian, wondering if he's also awake, restless and missing... I'm hoping very soon to have his laptop set up at the hospital, now that he's well enough to be sitting up for part of the day. I know being part of the blog world again, and reading all the amazing and inspiring posting from others will bring him so much pleasure and strength.
I wanted to fill everyone in on the latest developments, in the meantime. As of yesterday Brian has been getting TPN, nutrition in a liquid form through his PICC line.
This is going to help him in many ways as he recovers from his bowel obstruction. Then, on Monday he will get a PICC line in his other arm so that he can begin a round, seven days, of chemotherapy. This is an attempt to get his primary condition, the MDS, under control. Getting his associated bleeding condition (DIC), to be less of a risk to him is of fundamental importance. It is necessary before the transplant process can be activated. So, we all now can have a new focus for thoughts and prayers; may this chemo work as the medical team is hoping it will.
It should surprise no one who knows and loves Brian that he is completely unique in his manifestation of this illness, his responses to treatments, and even his basic body structure. Really, not a day goes by before we are again reminded of how unusual his case is, and what a mystery.
What a mystery, indeed. On so many levels...the feeling that we are cells in a single body, communicating with one another, sharing intelligence, information, emotional responses, surrounding with energy,and the desire to heal, the part of the body which is injured. All of us surrounding Brian that way. No one separate from the whole.

The kids are here this weekend. They will see Brian tomorrow and I think our hearts will burst to feel us all in one room, even for a few minutes. Turns out to be incredible timing with his busy week about to start. ...I've already shaved his head in preparation.
He looks extremely beautiful; soft and open, ready for what's ahead.
Thank you all for your responses. I woke up with your words in my heart and head at about three o'clock, in awe at the abundance.
Dwight, your presence here was like a powerful dream to Brian; he was so sick when you were in the room. Today he cried remembering you being here, and touching his hand. Please come back when you can. He misses you more than he thought possible.

with vast love and gratitude,
Joanne

Thanksgiving

Dear Friends,
I'm sure our silence has twigged everyone to the fact that Brian and I have been completely occupied with the medical journey for this past week. Brian was admitted to the hospital eight days ago. Originally this was to get the bleeding in his urinary tract under control, and also to see if they could normalize his blood levels with continuous blood transfusions. As happens in these situations, no sooner does the medical system try to get on top of one issue in the body, then another one surfaces. This week for Brian the next issue has been an obstruction in his bowel. Things had become serious indeed over the weekend, as there was little option for surgery and such a great risk of an infection taking off completely with his immune system rock bottom as it is.
What a harrowing few days; so painful for Brian, exhausting for me. I slept on a chair in his room for nights running, helping anyway I could think of, keeping updated with his vitals and bloodwork and listening in to the consults with the circulating rounds of physicians. What a time. Today, Brian is seeming on the mend. He still has a fever but his bowel is more clear, although not working on its own yet. He is alternating between sleeping and being quite irritable. Even I am getting sent out of the room with a wave from the back of his hand. My sister Lea says feisty is good, it indicates your body is headed toward survival.
Sigh, and prayers of gratitude. There is an awareness now in us and in the medical team of just how precarious things are for Brian. The hope is that we can get him stabilized, back to strength, and ready for that transplant. They do have a donor; ready to go, I believe. More gratitude to all the saint and angels and to the Creator. The work now will be in getting Brian healthy enough to go through the process. Ongoing emotional and spiritual support required for this next bit. Thanks to all who continue to hold us in prayer and thought.
I want to say how often I reflected on gratitude this weekend. The unexpected blessings of the kindness of strangers, the words in an email from an old friend, and the presence of people, especially family. Now that all of Brian's siblings have been here I can officially express my love for all of them. Its a family of individuals, so different one to the other, but all totally beautiful in all ways--spouses included, of course. We are all relatives. Special thanks to Louise for bringing them all into the world.
We are missing our kids like crazy, but feel completely calm with Mike and Lynn holing all the whole show. Now thats something to be grateful for. True friendship, true family.
I'm loving the postings, please continue. Thank you all for everything.

Love,
Joanne

Joanne's turn

I'm the designated writer today, as Brian is feeling unwell. He's so committed to communicating with everyone whose love, support, prayers and chants have been maintaining and sustaining us that he's asked me to write an update.
The last couple of days have been fairly stressful as the MDS has begun to make its effect upon Brian's body felt in some big ways. Bleeding and infection are the two big concerns and we've had a dose of both in the past few days. The infection is somewhere in the urinary tract and so is the bleeding. Its all rather alarming, especially on day one, but its amazing how fast you, as patient and spouse, come up to speed and begin to join the team in thinking clinically, strategically about things. 'Okay, here's the problem, lets find the cause and the solution and move forward with a plan.' In the leukemia/bone marrow transplant unit they really utilize and empower the patient and the partner, and give both of us all the information they have moment to moment. It truly is a remarkable part of the health care system and most of the time we stand in awe at the science and the heart that is part of every aspect of Brian's treatment. Life appears miraculous on so many levels and so continuously...the body, in balance and out of balance, seems to me a portal for light. At the moment, Brian with his multitude of bruises, dressings, and in his diminishing strength, is a luminous being, with all those prayers,mantras, and heart felt wishes shining through him.
Please know I feel strength coming in from all of you. Thank you for loving us, being hopeful with us ,and helping us imagine the future.
I am thinking of the poet Rilke's vision; that in our deepest selves, God is still growing.