Fourth of July

I'm sitting here hooked up to my IV pole, and at last have a high speed internet connection (I live in the boonies) which makes for happier time at the computer. I took a four mile bike ride this morning, and can walk about two miles - I feel like crowing at people I pass "I just got out of the hospital a few days ago!" I have had a mass of small complaints - almost all drug side effects, which I will spare you the details of, but at least some of them are resolving. I have a flush on my upper body which could be the beginning of GVHD, but I did have some of it before the transplant too, so only time will tell. I go in and out of worries, but no major bouts of fear.

The wonders of being home are slightly tempered by my sun restrictions, and the fact that we are in a heat wave now, so even in the home can get oppressive. But it gives us glorious early mornings and evenings, which are the only times I can really go out anyway.

My bloodwork on Monday was great - I am well on the way to normal counts.

I spent last evening with Dennis, and we watched the Sebastopol fireworks from his car, and took an evening walk. I think today I will have dinner with my kids, and who knows who else. We'll do it at Russell's, as his house doesn't get as hot. I hope you all are having fun today.

Anne

Home Today

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

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

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

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

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

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