By this afternoon I will be back in Sonoma County warmth and sunshine. Though it has been almost as good as it gets for a stem cell transplant, it has still been really hard. It will be wonderful to unwind it all, and continue on with this marathon healing journey from a much greater place of comfort.
I will continue to post, though not as often. Thank you all so much for your faith and constancy and support and prayers. Let's keep envisioning my very healthy body and full life ahead.
Love,
Anne
Friday, June 29, 2007
Wednesday, June 27, 2007
The end is in sight
My hematocrit was up today, so it looks like all systems are go for going home on Friday. I will need a daily IV nurse for magnesium (a side effect of the immune suppressant), but I will be able to learn how to do it myself. The mucositis is slowly subsiding, and I think I will not need painkillers tody.
So many hurdles passed, and a ways to go. The love and support has surely been one of the keys to how well this has gone so far. It is really all quite amazing - my sense of the little "I" is much diminished in the largeness of it all. The most difficult thing has been my mind, my fear and my resistance. It has been great to get to see that so clearly. I think grace is always there for us to step into. Your cards and e-mails have been great reminders for me.
Off for one of my last boring walks in the uninspiring halls. Always grateful that I can walk, when many on this floor cannot.
Love,
Anne
So many hurdles passed, and a ways to go. The love and support has surely been one of the keys to how well this has gone so far. It is really all quite amazing - my sense of the little "I" is much diminished in the largeness of it all. The most difficult thing has been my mind, my fear and my resistance. It has been great to get to see that so clearly. I think grace is always there for us to step into. Your cards and e-mails have been great reminders for me.
Off for one of my last boring walks in the uninspiring halls. Always grateful that I can walk, when many on this floor cannot.
Love,
Anne
Tuesday, June 26, 2007
Numbers Up
My white blood counts shot up to normal today. My hematocrit rose, though it's below normal. My platelets are still needing daily replacement. They will be what could delay my ability to go home, but hopefully will come around some. So I think now Friday is probably the earliest I can leave. I still feel crummy from the mucositis, and maybe directly from the last methotrexate, but I have reduced my pain meds.
I am starting to get that institutionalized feeling, can't quite remember what it was like to be out in the world. Definitely time to go. Oh, for an uninterrupted night's sleep...
My IV alarm is beeping - happens about 15 times a day - must go.
Love,
Anne
I am starting to get that institutionalized feeling, can't quite remember what it was like to be out in the world. Definitely time to go. Oh, for an uninterrupted night's sleep...
My IV alarm is beeping - happens about 15 times a day - must go.
Love,
Anne
Sunday, June 24, 2007
Day 11 Update
Well, my stem cell coordinator had told me at times it would be one step forward, two steps back. The day after my big jump in white blood cells, they hit a new low. Today they were up slightly from that, so I think there is engraftment. My mucositis hit, and at this point am on round the clock pain meds and can only swallow soft foods. Also I itch all over my body, and at last my hair is falling out. As I get my last dose of the immuno suppressant that is giving me the mucositis today, this will not turn around for a while, probably get worse, and the hardest thing for me is just being here longer.
Well, thank God for the painkillers. They want to give me one of those self dosing pumps. Lucy has made me a lovely custard that is the only food I can both swallow and enjoy.
So all this is just temporary stuff, and the big prayer remains no GVHD, no leukemia.
Love,
Anne
Well, thank God for the painkillers. They want to give me one of those self dosing pumps. Lucy has made me a lovely custard that is the only food I can both swallow and enjoy.
So all this is just temporary stuff, and the big prayer remains no GVHD, no leukemia.
Love,
Anne
Thursday, June 21, 2007
Must be the time of year,
all the light and resulting new growth: my white count went up today, showing engraftment of the new cells in record time. Once again, the power of our prayers seems evidenced. Alleleuia!
I have also hit the nadir, feeling cruddy and having a certain amount of mouth pain. I have had strong pains and strong energy feelings, in my legs mostly, and had attributed it to riding the exercise bike with a very low hematocrit. But it is "bone pain", from the marrow developing very rapidly. It is much like labor pain, building up to an almost panting intensity, then passing.
It will take a while for my blood to develop and stabilize enough for me to leave, and as it does, to see if GVDH asserts itself. But if all goes well, I should be out by the middle of next week.
Once again, thank you all for your prayers and well-wishes.
Love,
Anne
I have also hit the nadir, feeling cruddy and having a certain amount of mouth pain. I have had strong pains and strong energy feelings, in my legs mostly, and had attributed it to riding the exercise bike with a very low hematocrit. But it is "bone pain", from the marrow developing very rapidly. It is much like labor pain, building up to an almost panting intensity, then passing.
It will take a while for my blood to develop and stabilize enough for me to leave, and as it does, to see if GVDH asserts itself. But if all goes well, I should be out by the middle of next week.
Once again, thank you all for your prayers and well-wishes.
Love,
Anne
Monday, June 18, 2007
More No News
It is Monday morning, and sunny here in SF. It really makes a difference to my mood. My blood is low, but not yet at its nadir. If things go well, my new cells will engraft, and by the weekend my counts will start to come up, and hopefully I can go home on Tuesday. Once home, I go to the clinic twice a week (an all day affair) for three months. I keep this central line in for the three months, which looks like spaghetti coming out of my chest. I am still at risk for infection, and Graft vs. Host Disease(GVDH).
My spirits remain good most of the time. The days are long, but finally one turns into the next. I walk the halls with a mask on, and occasionally have a good talk with a fellow patient. Nancy says the garden is looking spectacular, and I am eager to see it.
With gratitude,
Anne
My spirits remain good most of the time. The days are long, but finally one turns into the next. I walk the halls with a mask on, and occasionally have a good talk with a fellow patient. Nancy says the garden is looking spectacular, and I am eager to see it.
With gratitude,
Anne
Saturday, June 16, 2007
HANGING IN THERE
No news is good news at this point. I feel a little crummier but nothing major. My blood counts are lower, but not yet at their nadir. With luck (prayer?)that low period will be very short and the stem cells will engraft and voila I will be out of here. So be it! Meanwhile I am having very good realizations about my mind and walking in and out various states (fear, aversion,victim feelings, etc.). A woman down the hall is dying of Graft vs. Host Disease, and that has been something for me to enlarge my heart around. I believe I have. Lots of suffering here, and lots of amazing transformation.
Love,
Anne
Love,
Anne
Subscribe to:
Posts (Atom)