additional info added to last post:

Just learning more about this eye thing she's contending with so I thought I'd update: In regard to the cells that I mentioned: this is one of the possible side effects of radiation and chemo- affecting the eyes, so it's not so much that she has a temporary condition or infection but that this is a result of her treatment, so we really don't know if/when her eyes will function "normally" just as she has neuropathy in her feet. Recovery is possible, but there isn't a magic pill that's going to make it go away. It's been about 10 days since her eye's were diagnosed, and she says they're better, but it's an ongoing irritation throughout the day, adding drops every 30 to 60 minutes, etc.
will post more before I go back to SF, all for now.
K

It's been so long...

Since Margie hasn't written since her May flowers post, I'm visiting for a week or more and thought I'd just jump in and let you know how the heck she's doing.
In a word: really good. That's two words, but still captures the feeling.
Currently she's dealing with an bit of a nuisance with her eyes: as a result of the radiation to her brain/head, it's affected her eyes in so far as the lubrication of them. We've all got two main lubrication sources with our eyes. The ducts that make them tear and another area that controls the 24 hours lubrication of the eyes. well, her cells in this department (the 24 hour one) haven't been working correctly due to the previously mentioned radiation and so she's had to jump through some hoops what with discomfort, pain, hurting eyeballs, figuring out that an ordinary opthomologist wouldn't suffice and ended up at the hutch last week with a doc that deals with the eyes of transplant patients such as Margie. If you'll pardon the pun,
BULLSEYE! By sunday her eyes were feeling much better and on the road to recovery. They're making a little progress every day. Yesterday she said that if normal were one and bad were 10, she's come to about a four, so that's great.

Overall, she seems terrific. Her day starts with pre-breakfast meds (about 6) then a dessert of about 8 more, comprised of transplant specific drugs and vitamins. The day ends with the same regime. I would describe her energy as steady and consistent, but ready for a nap in the afternoon as well as bed time at night. Her body is at an ideal weight for her height, so she looks fabulously perfect in her clothes. Dissapointingly, her hair has not come back to the pre-leukemia lenghth, luster and fullness that she's enjoyed her entire life, but luckily has a wardrobe of wigs with which she can cover her head.
Some science fiction type results of the stem cell transplant: her nail beds and finger nails have morphed completely into a whole different set of hands. Weirdest thing- her nails have always been sort of "stumpy" if you will and never could grow the coveted 10 nice finger nails. Now, the whole enchilada of the nail bed and nail has completely changed and she's got this long, perfect oval specimins of nail perfection!
Another amazing post transplant side affect: a reduction of some of the wrinkles on her face and chest!! Sign me up already!
I hope this gives you a small overview of how Margies adventure with leukemia is going.
All is well and she's doing great.

may flowers

I can't believe how much better I feel now that I am a couple of weeks away from the cylosporin. Even the small dose I was on at the end of the taper still gave me the exhusted feeling. I'm still taking some two hr naps most days but I feel much more myself and able to focus on things like mothers day cards and the ordinary events of day to day living. The drug was also elevating my blood pressure so I stopped the blood pressure med but my bp started to go up again. I am taking the bp every day and have been in touch with the Dr. who said to monitor it and take the med accordingly so I am. I am taking the bp med again started with a 25mg instead of the 50mg I had been taking but the bp kept going up- 150/90 so I went back to the 50mg.
I must say my caregiver, my husband, makes life supremly comfortable for me. He fixes breakfast every morning, does the dishes laundry grocery shopping vacumming and sets out my morning and evening meds including recording everything. So every time were at the Dr.S, monthly now, and he asks what medications are you on? He just whips out his up to the hour list and I don't have to remember or say anything.

May flowers and getting back on the treadmill is my program now. Fortunatly I was offered the use of a treadmill in my neighborhood, just accross the street. I would love to return to the gym but I am afraid of the chance of infection. So this will fill the bill. I know I have lost muscle mass as I pretty much stopped exercising the last four months- I'm ashamed to say it- because I know totally it's importance and I've mostly had a consistent exercise program in the past. In fact I got a reward- tangible proof- of my efforts when I had the test to evauluate lung capacity. The technition showed me on the graph when you exhale with all your might, the graph will just show a small hill if your abdomenals are weak, but if your abs are strong the graph will show a high spike and mine was way up there even tho I hadn't done situps for several months. God that was good to hear and see! It
almost made that miserable test worth it.

Love to all, Margie

good doctor visit yesterday

Yes, I had a good visit. My dr is a very upbeat person, and starts out the visit saying " you look beautiful as always and your doing so WELL!!! how is that for a boost?
One disappointment is I am being treated for a urinary infection for the third time in five or six weeks-like he said, it probably never went away but the good-great news is that yesterday was my last day on the immunsupprent drug cyclosporin. Over the last several months they took me gradually from 200-250 mg a day down to 25mg and that ended yesterday. He also said my immune system will grow quickly without the suppression and his hope is that will take care of a another recurrence of the urinary infection in fact, he said I would be my old self by August! I was so thrilled to hear that I didn't know if another year would have to be spent vulnerable to infection. Presumably, as this immunosupprant has decreased, the immune system has been growing, and I'm not starting from zero. One side effect of the drug is it raises blood pressure so I have had to be on b/p medication to keep it down. It was 128/82 at the office to I'll have to start taking my own b/p to monitor it. He said I could stop it -whenever.

We are getting hail in mid April.

I know I am finally getting more energy back. It's nothing to write home about but I rarely have the weird-to- my-core exhausted feeling,like can I make it to the bed. and then after sleeping two hours I'd feel exactly the same was when I woke up!
I sleep during the day two hours, yesterday it was three. I am so thankful that this is what I can focus on- doing what feels best for me. So many have obligations that would make focusing on yourself difficult and energy draining when there is none to spare.

I have greatly enjoyed reading Eckhart Tolle's A New Earth and following he and Oprah's podcast discussion of the book. The essesce of it is how to live in the present moment and what could be more theraputic for someone with a serious diagnosis but for all to better deal with difficulty that comes in our lives.

Love to all M

all better

Last day on antibiotics yesterday and I feel soooo much better. I am not sure how a urinary track infection got in my blood,I'll talk to the Dr. about it when I see him on April 16th. My temp dissapeared three days after I started the right antibiotic, but I am continuing to monitor it daily for a while.

I walked today and did my Hutch exercises while I watched a movie. The two weeks with the infection did do a number on me- wiped me out. Now I feel much better, Still can have nice 2 hour naps during the day tho, It is a good feeling to be able to do that. Sort of care free.

This coming week is a difficult one as April 9th is the five year anniversary of the loss of our three month old grandchild, Noah Robert who was born with a very serious congenital heart defect. The Dr's didn't know how long he would live so
his parents, five year old brother and us set the goal that Noah would have the happiest babyhood we could give him. That meant it had to start with us- we had to be happy, be joyous, celebrate his being, marvel at his smile which started early and hold him incessently, oh yes, Noah spent his entire life at home. He had many friends come over,with baby gifts, flowers and food and so many desserts. Noah had a birthday party every week with cake. His grampa gave him his first taste of chocolate cake. He saw the Pacific Ocean, He heard music, admired his brothers favorite toys. Father continued on to work each day to maintain the family. Noah had to eat frequently so I did night duty so Mother could be rested in the morning. It was five years ago but it feels like now. I guess that is the mystery we don't understand. How someone can be here and then not be here when we feel ourselves and others to be forever.

love to all, M

Easter Sunday nite

Everything seems to be fine now but I had to be started on antibiotics in what turned out to be a urinary tract infection that also went to my blood. So Sunday nite I had a 101 temp I went locally to get blood cultures done the next day and threw in a urinalysis on my own. anyway I was started on one broad sprectrem antibiotic to try and cover me till the final cultures were in-3days-it turned out it was not the right drug so I was switched to one that would be effective. The same bacteria in my urine was in my blood so they thing that was the source.

The hardest part of all this was it has been pounded into my head by endless medical people that you must go to the hospital immeadiatly if you find your self having a temp whitch were happening for 2 night during the hours the ferry is not running to Seattle. But my Dr. helped me by saying take your temp at bedtime, then in the morning if it is not down then call me- ferries would be running then- so I was able to go to bed and not obsess and keep taking my temp. So that felt good. In the morning it was down and the cultures were completed that day and I DIDN'T HAVE TO GO TO THE HOSPITAL.

love to all, M

good friday

It was our infirmities that he bore,our sufferings that he endured while we thought of him as stricken, as one smitten by God and afflicted. But he was pierced for our offenses, crushed for our sins.

All good news, everything is negative in fact they didn't do th flow part of the bx because it wasn't indicated. The other great thing is I had the Hickman catheter in my chest taken out as I'll only have blood draws monthly that should be doable. It is an adjustment, I have lived with it since June 06. Flushing it daily, drsg changes, changeing the caps at the end weekly. You get attached to things. I was so attached it took the surgeon 45 min to be able to remove it, as he said if your don't reject it it becomes part of you. But it always functioned perfectly and considering I had blood draws most every day for 6 months on top of about 20 blood/product transfusions.oh, and the transplant which came in the form of a transfusion. The Hickman meant I didn't have any worry or a second of pain or watching my veins being distroyed and wondering if one could be found next time. I saw a patient go through that on dialysis, his last line fell out. He and those at his bedside knew what it meant- I stepped out of the room and cried.

It is hailing now. Thankyou for checking the blog, thankyou for your thoughts,concern and prayers Love to all, M

still waiting

Hi all, last wed was Dr visit where I thought I'd get all the results from the bx two weeks before. Feb.25. Well the bx was free of any evidence of leukemia but another part of the test which they call the flo was still pending my Dr computer said. We talked about taking out the Hickman catheter in my chest and that a surgeon would have to do it with just a local anesthetic. So I am ready to move on this. I put in a call this morning stating the above- no word back at 4pm.

So we are going to a small St.Patrick's dinner tonight, traditions fare, it will be good to go out. I hope there is some Irish music. I feel like dancing. Actually I did some dancing today, I was sorting music Cd's and played one I had bought for our 50Th anniversary party titled wedding celebrations or something, I thought it was slow dignified music, and I never played it until today. Michael Jackson's "Billi Jean" is what got me going, turned it up plenty loud too- fun.

Love to all, M

the sun is shining!

Just a few words to bring everyone up to date.
M had her biopsy on the 25th of feb. . Then a clinic visit,at Virginia Mason, on the 27th. That was too soon to have any results back from the SCCA. We go to V.M. (Virginia Mason) on the 12th, tomorrow, for a scheduled clinic visit/blood draw. Then we should have info/news.
We, M and I (Robert or Dad or caregiver) are fine. We kind of live day by day, enjoying each one fully.Things are pretty normal here. It is a fine day, like I said, the sun is shining. We go out for walks as we can, when M feels up to it. I always have something to do what with the yard and the daily "chores". Have started some peas in the greenhouse. Have spread manure on most of the garden and have it tilled.
We start ever day with pills and end every day with pills. A couple have been stopped now and M is on a taper for the rejection drug cyclosporine. At that time a couple of others stop. M takes pills to counter the effects of other pills!
All for now, we are well. Some times we get side tracked and forget family and friends who wonder how we are.
my love DAD

No news is good news

Margie's not writing, so here I am again. Missed all of you and by the look of the tracking that we have on the site, you're checking in (albeit less regularly) and haven't seen any new info.

So, here I am.  I'll just  throw out some factoids as I think that's an easy way to convey what I know and avoid telling some long story. 

- bone marrow biopsy done two weeks ago- I think around feb. 25- as of friday, she hadn't heard anything back so I of course took that as a "no news is good news" type of message.

Lord know's when there's something bad, the bearer of the news manages to contact the patient 

(in this case) chop, chop.  

M will be doing some blood work at the Hutch which is part of the package as she is a recipient of a transplant  there and thus, willingly gives her blood (and more) for research so that other cancer patients can benefit from what the Hutch learns from her case. (So much we don't know!)

-M did mention that she had some unexplained pain in her hip that was keeping her from walking. When she'd gone in to see Doc Picozi, he'd done an x-ray (always looking for that GVHD,  doncha know) but hadn't found anything to  be concerned about.  Since then, she'd reported that it seemed to be getting better.

- When I called about a week ago, M was about one week post biopsy which apparently was rough (as they can be) I had my dad, R on the phone and then Margie on the other line and of course, when I asked her how she was feeling, she said her usual "oh, I'm fine" and dad piped in with: "you are not, tell her you feel like crap" 

Here's what popped into my mind:

-how lucky to have a spouse after 51 years that tells it straight.

-51 years! oyvey. 

-glad Dad spoke up and said that, as it's good to deal with what's real, and there's nothing wrong with that, even for a stiff upper lip lassie  like Margie.

-cancer sucks

But, alas, isn't everything soooooo much better than it was a year ago, 9 months ago? you get the idea. Of course, easy for me to say. I'm not the one going through all of this. But how incredibly fortunate we are that we can move on with our daily affairs, dealing with  the mundane and not hyper-focused on Margie, the leukemia and the outcome of her transplant.

How blessed I feel

Love, 

Kathleen

Is it still February?

Enough already! Lets get the show on the road. I'm reved up but I can't move very fast. I guess right now I should let my fingers do the walking, as they say.

Dr. visit tomorrow for blood work. I now have a date for the bone marrow bx with sedation, Feb. 25th. I tried hard to get it done at the center where I spent seven months but they wanted it done in my oncologists institution- "besides, everyone wants them done here!" I told my Dr. that and he said "then why don't they do them?'" so he backed me up by saying "they do them every 10 minutes over there" whatever, I have had it done there before and it went fine.

I also have a date-appointment for my one year checkup- will last four days, it is Aug. 4th. We will get a room in Seattle for that time. I will also have to be re-vaccinated for the childhood diseases such a whooping cough, polio,etc.

My aches and pains? not much to report, thankfully, my appetite is down, sometimes I just don't feel like eating at mealtime [ never experienced that before] I am supposed to eat 70 grams of protien a day which I usually do. Oh, and 8 to 10 glasses of water. which I generally do too. The neuropathy in my feet has been giving me more trouble at night, they start to sting and it wakes me up.

We have dinner reservations for Valentines Day at a restaurant that we always enjoyed but has been closed for several years for renovation which left us without a favorite place to go close to home. The other thing about this place was that it had some atmosphere, it made you feel you were somewhere special, as a result people used it for special occassion- proms -other special occassions. What I am saying is that you could get dressed up and not feel out of place. Living in a small community you can dress casually and go anywhere. So I am on my way to try on a few dresses I have and what to go with them- fur jacket? red trench? It will be fun.

Looking forward to any comments, Love, God bless you all, M

good Dr. visit yesterday

Yes, it was a good visit. My lab values are all at or very near normal. I had a rough area on my skin on my chest but the Dr. told me to put some antifungal cream on it and it did go away. They are very concerned about your skin in the post transplant period.
The graft versus host disease can manifest in one or many organs or systems of the body for an indeterment amt of time. More than one Dr. has said each day that is good make your odds of survival better. This is a good day, as I look out on our cedar forested property it is sunny and breezy with blue sky and white clouds peeking through the treetops.

Cathy is having a birthday this weekend so we're having her over. Richard, our brother is having a birthday too so I hope they can make it. I'm making carrot cake that everybody raves about and chasens chili, of chasens restaurant in Hollywood Ca. Liz and Richard Burton had it flown to rome when they were making Cleopatra. It is excellent. Green bell peppers is the secret.

I was reading my favorite and only blog this morning, Thomas Barnett.com, and he is starting another book and he shares what it is like to beat out the first 2000, 5000 words after I read that I said I can cirtainly add to my blog!
The thing about writing is you have to start writing! Really all those personal creative endevors, painting, music, sewing, writeing, reading, it almost always flows if you give it a good start and arrange things so it's handy to pick up again. Right now I know more about the presidental candidates then I've known in all the other elections put together. I need a break.

Thanks for your prayers and fathfullness Love, M

January 21- too long between

Yes, too long between blogs. Three weeks. I talked to the creator of this blog Kathleen, this morning and she told me to get on it- what was the matter, didn't I have anything to say? I said sorta. So she rattled off a list of topics- Last Dr. appt, what we do when were over there, my next bx date [biopsy], my exercise program, what moveis I'm watching, whats Dad doing.



It sure is nice to have someone in your life that can shake rattle and roll you.



First I'll say I am feeling good. I continue to show no symptoms of either the Leukemia or the transplant side effects of host versus graft disease which I had a mild case of in the gut but so far the symptoms of that, vomiting has not returned after being off the prednisone now for over a month. That was my hope and goal. It was a month Jan.14.



Last Dr. appt.---We both gussie up for these every two week appt.- it's the only place we go! we take the 11:30 ferry as we live on an island, drive up the steep hills to the oncologists office, I have numerous blood samples drawn from my permanent hickman catheter in my chest and we wait for the results and see Dr. P who has been my Dr. from the beginning, I like him very much, he likes to laugh and joke around a lot. When he asked me what I was doing with my time I told him "STAYING ALIVE!", he said, YOU MEAN LIKE THE BEE GEES?" I said, YES!!!



what we do while we are over there: The hospital where the Dr. is located has a well appointed hotel in the same building open to the public or patients. The hotel has a very nice restaurant where you don't feel your in a medical setting at all. We always have a late lunch there after the appt. The food is good. You might wonder in the middle of a city why don't they try other places? Difficulty parking, hills, not a lot of energy left to do what we would normally do. It's quiet and relaxing we can hang out there as long as we want then drive down the hill and get the 4:40 ferry, home before 6'00.



My next bone marrow bx: I was notified by phone and letter that a bx is called for in my protocol at 180 days after transplant. It's in the works but I don't have a date yet. I wanted to have the conscious sedation I had at the center 4 other times but I've been discharged from there and she said the workup is too time consuming. But I could have what they call the lollipop- Fentenal-I had that once and didn't feel much pain so I said I'll take that. Your more groggy after the lollipop than the conscious sedation. That will be at the end of Jan.



Exercise- must do more, did walk 30 min today at 30 degrees.



Movies: "Marty" Ernest Borgnine, best actor, best picture 1957 and "Born Yesterday" 40's comedy with Broderick Crawford and Judy Holiday, a comedian in her own right.



What's Dad doing? Dad says he's pushing pills-my pills 12 in the morning and 10 at night in between he continues to paint and floor our room over the garage, putting up a handrail this week waiting for varnish to dry in the cold. He also said to add that he is cleaning up our two onehalf acres that has been neglected for almost two years since my diagnosis. He also does laundry, washes all the dishes, changes the sheets on the bed, does a good part of the cooking, groceries, plus the garbage/out door business. He also reads a lot of novels from the library and is reading stuff to better understand how his digital camera works.



Ok, how did I do, I know I did fine, like so many other things it's just getting started.



Love to all. Margie

Happy New Year to All

Wow what a priviledge it is to be typing again on Margies computer, this has been an amazing experience, just to know she and Bob are home now, and what has taken place ever since last April, and now the goodness just keep on going, its great to write good reports and happenings, and to use this blog for good news, thats what Margie is all about, she is looking fabulous, and feels much better, Her energy level is alot better from my stand point, and just seeing her and her attitude and presence is so full of life.

Status of Margies Groin: margie says she is afraid she left you hanging on the groin business it is well.

What a suprise we had the night before Christmas Eve, when all through the house creatures were definatlly moving about. What happen was... Are you ready?? Well were at Rod and Colleens house and opening some Christmas gifts, They and Carol and Michael handed us an minilla envelope and were looking at us with expectation looking at us being thrilled,so when I pulled the two sheets out of the envelope each had a photo with two people I had never seen before. I did not have my glasses on so i couldn't even read the explanation at the top of the page, and the cameras was flashing to capture the great moment of excitment for us but I had no idea what the excitment was all about. It turns out our kids found two paintings done by my grandfather done in 1924, found on ebay . Now I got very excited! It was unbelievable that these could be foound Margie