G

[Guest guest]

Hello G.

Good to see you post - I don't post much but I do read them all. I saw yours and

was anxious to see how you are. I also read with great interest, your tentative

plans to be in AZ in January. If you need a place to stay you are welcome I

want you to know. And if not, we could at least plan for a lunch again?

Grad school? My goodness. We in CMLand get ambitious don't we? I was in the

middle of a master program when diagnosed. I found the work to be the best thing

for my spirit. I hope you are finding great satisfaction in the study...

On your PCR- often times are they not a false positive or false negative? I

think it happens on occasion. I hope that is your case and you continue to be in

remission.

I remember our lunch and visit in sdale. I remember thinking that you were

someone who was in charge of their own health and brave to do so. I also

remember wondering what would cause someone to want to take a gleevec break? I

would have been scared to do so. Well, most recently, I have developed

lymphedema and great water retention that causes a loss of mobility and great

pain. It has gone on for six months now and I went through a barrage of tests,

CAT scans and such that turned up a liver lesion and a 'vague nodularity' in my

right lung but nothing that would cause the water retention. Thus I am sure it

is Gleevec. My patience is just very thin at this point and my temper is close

to the surface. The constant pain really wears away my patience. I get so tired

of it I cry. I am visiting with my oncologist Oct. 3 to see what we might be

able to do... lasix just doesn't do it.

At any rate, I need to stop whining.

I wish you well and I would love to see you again.

Study hard. Rest well and be sure to take good care of yourself.

Peace

Barb

PS: Can't do the marathon I am sure, but am doing a 3 mile light the night

walk Oct. 15. I have 40 team members walking with me.... providing I can make -

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Message: 2

Date: Wed, 21 Sep 2005 23:03:13 -0500

From: " jennifer g " <jenniferg@...>

Subject: Quick Check In

Hi all,

I am sorry that I don't keep in better touch with my CML friends. I

don't remember there being a day yet that I forget about having CML, but

I guess I'm just putting it on the back burner right now.

I started graduate school part time after Labor Day, and it's turning

out to be a big challenge while also working full time. I'm probably

spending about 15 to 18 hours a week on studying and homework, which is

typical for taking 6 credits (estimate 3 hours of work per credit per

week). Biostatistics is a tough one! But I like having those " ah-ha "

moments where something actually crosses the Gleevec-brain barrier. I do

find that I have to re-read my texts a lot and take my practice tests a

lot to remember things, which only adds to the workload.

I recently adopted a shelter dog again. Some of you may remember that I

had to euthanize my last dog last summer at age 14 and a half. This new

one is part lab perhaps mixed with greyhound, as she's got very long

legs (making her very tall) and an enormously deep chest. She's 70

pounds and underweight. She's a sweetheart but needs some work on

housetraining and separation anxiety!

I also continue to work with Team In Training. I am scheduled to head to

Phoenix in January for the marathon/half-marathon, but I'm not sure I

can get the time off to do that. Are any of you going out there for the

races? If so, that may be incentive for me to go.

As for CML, I guess I am doing OK. My last PCR test was positive and the

FISH was ever so slightly positive. But they re-ran the PCR and it was

negative the next time. I don't understand that. Any thoughts? So we've

just decided to watch and wait for now, with another bone marrow likely

in December or January and some bloods in the meantime.

I am still having some trouble in my leg from the DVT (blood clot) I had

in late May. But my breathing problems have essentially gone away in the

wake of the clots to my lungs. I have a host of new side effects to

contend with thanks to the addition of warfarin (Coumadin) to the

medication mix. I am a naughty patient and totally disregard my warfarin

diet, which means I need to just get my blood checked more often and my

meds adjusted more frequently. But it's less stress for me. :-)

I try to keep up with you all, but that damn continues to

periodically bounce me, which means I don't get the emails - and don't

realize it.

Anyway, I think of all you 'old-timers " frequently, and hello to the

newbies. One of these days, I hope to work on the Web site again, but

unfortunately it's too large for me to effectively maintain by myself

anymore, especially given my schedule. I'm sorry about that.

jennifer g.

www.cmlsupport.com