Improving

Hello there,

I just got back from the clinic, and the news was good. My counts are holding or rising in spite of the new anti-viral which lowers counts. My liver enzymes, which hit a high at the hospital, are starting to come down. Best, my NP thinks I am a good candidate to start to wean off the tacrolimus (immune suppressant) at 60 days, which is just 2 1/2 weeks off (it is the doctor's decision). Also I get to go down to one visit/week then, providing I stay stable during this time. I went off one antibiotic and my fever came back this week, so I am back on it now. So it still seems like a dicey time period, but with good luck, not for too much longer.

My energy is recovering slowly but steadily since this last hospitalization, but still not as good as even a few days out the last time. We have had foggy mornings, which have made me feel more at ease on my walk. And temperate afternoons.

Dennis comes up tomorrow afternoon for almost five days - a rare luxury for us. It will be a wonderful and needed break and rest for him. And Nancy will take off and go camping, which is her idea of a good time.

Thank you once again for your prayers and support.

Love,
Anne

No real news. My low grade fever is hanging in there at this point, but I am feeeling a little more energy each day. We are in a hot spell, though not horribly so, and I am trying to get up earlier to get my walk in, and walk again in the evening. I am adjusting to a life of high uncertainty and limitation. What a change of a way of being for me.

I hope you are all well.

Love,
Anne

Home Again

And I am so fortunate, a very temperate breeze is blowing through the house. It really feels divine to my still somewhat feverish body. My temperature is a little lower today, so hopefully my doc was on target with his guess that the fever has been from the CMV, and would take a few days on the medication to respond. My platelets are coming up again, and my bone marrow biopsy looked good.

All's well that ends well. And all is ultimately OK.

Love,
Anne

I am probably going home today, in spite of the fact that my temperature has risen somewhat again off the IV antibiotics. I still think I have a sinus infection, and we haven't found the right antibiotics. At least my guts are starting to feel better on the flagyl. They also found a low titer of CMV - cytomegleovirus, so I am on a new drug for that. I knew I was CMV positive, as is 90% of the Bay Area, and it would probably raise its head at some point of immunosuppression. So I go home on 3 antibiotics, 2 anti-virals, 1 antifungal, my immune suppressant, and a drug for the heart burn that one of these causes. And a fever still. I am not sure I got anything out of this week in the hospital, except it was easier to do tests here. Well, maybe home and rest will bring the cure.

Anne

Slow Improvement

My fever is a little lower today (only 100.5 so far). They have found an intestinal bacteria, one that usually gives diarrhea, but for some reason I have become very constipated, as revealed by the all knowing CT scan. They are hoping to send me home on Thursday. I have to be on flagyl for a week, which makes me nauseous, but perhaps will finally get me out of this particular woods. Between the immune suppression and graft vs. host, it is a hairy line. Add in drugs with serious side effects (and on to the drugs to deal with the side effects) - I will be so glad when this time period has passed. My platelets are on the rise again, so it looks like engraftment is going well. My white counts hit some good highs fighting infection, that I do not think my body was able to do for a long time. So this looks like the strong immune system I have needed. They will do a bone marrow extraction tomorrow, I think unnecessarily, but the reassurance will be nice.

Stay tuned in for the thrilling blow by blow accounts. I hope you are having wonderful summers. My brother Stephen is getting over shingles on his face, so I hope he feels better soon.

Anne

Long bump?

Well, it is Monday afternoon, and my only improvement is that my fever is not going quite as high. It doesn't really appear that the antibiotics are working, and the docs don't know where the infection is coming from. I still hold out the theory that it is at least possibly my age old dental cavitations (places that did not fill in with tissue or bone after dental extractions, that can harbor infections). The docs hold that as a possibility but did not take my suggestion to try more anaerobic antibiotics. And it could be GVH, although I have elevated white counts, and a higher fever than would be normal for that. My red counts and platelets are down, which could be from either cause, or even just from an uneven engraftment process.

Perhaps I am just meant to contemplate the deepest meanings of existence in a small room with white walls, and an intermittent view of San Francisco when the fog lifts. I certainly seem to be getting continuing lessons in the art of surrender. I am ready for the lessons to get easier.

Someday this will all be over, and this blog will be no more, but until then,

Your faithful blogger,
Anne

Bump in the road

This is Dennis on Anne's computer. She is back in the hospital (UCSF) as of last night, 7/13, after hitting a temp of 101.5. She had been running an on and off temp about for about a week. 101.5 is an automatic admit and off Nancy and she went to the ER. I met them there around 7:30 last night and after a bit of the usual hospital paper work screw ups she was taken to her room (1473 L).
She was tired. She left the hospital earlier that day after waiting 4 hours for her clinic appointment only drive home in Friday rush hour another 2 hours. Needless to say she was fed up with the whole medical system. Today was a bit better but not that much. She was CT scanned, MRIed, nose scoped, and given the wrong diet. No real source of the fever was apparent. She hit 102.8 on Tylenol at about 4:00. Some time after that the fever started to reduce and she managed to produce some green colored, I guess the only way to put it, snot. We were very relieved as it was a clear clue as to the source of the fever. She's on IV antibotics and hopefully the right ones will clear up the infection quickly, then home and back to life. Before I left, her appetite was back and we had a good dinner of soup and salad her temp was around 100.0 and spirits were much better. I'll keep you posted.

Much love to all,

Dennis

Well, I have a mild case of Graft vs. Host, which is being monitored very closely. I definitely have a rash, which is spreading. I might have digestive issues as well, though it is hard to know what the cause of that is. I don't know at what point they would put me on prednisone, but I suspect I am close to it from the degree of scrutiny on the docs' part. I also got a sinus infection again, so I feel somewhat lousy, though not incapacitated. I am trying to get NO sun. I still take my morning walk, which is mostly in the shade, with heavy duty sunscreen on and maximum clothing/hat coverage. I am suddenly close to being a shut-in - unless I learn to be nocturnal, but I am totally pooped by evening.

Some Graft vs. Host is good - it is also Graft vs. Leukemia, and this amount is very livable. The concerns are of it getting worse. And my concern is never getting to go in the sun again. Only time will answer these questions.

Nancy just came in from weeding. It's so hard for me to let people work for me! The yard looks great, and it is very lovely for me to look out on. We have returned to foggy mornings, which make for temperate afternoons. Life is good in Sonoma County.

Love,
Anne

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