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

Santa Claus

Most people have seen this before but it is so good it is worth hearing again, it was in our paper this morning and  it made my day. First printed in the New York Times, 1897.

"Nobody sees Santa Claus but that is no sign that there is no Santa Claus. The most real things in the world are those that neither children nor men can see...there is a veil covering the unseen world which not the strongest man, not even the united strength of all the strongest men that ever lived, could tear apart.

Only faith, fancy, poetry, love, romance, can push aside that curtain and view and picture the supernatural beauty and glory beyond. Is it all real? Ah, Virginia, in all the world there is nothing else real and abiding."

So from George F. Handel, in 1743:

Joy to the world! the Lord has come, Let earth receive her King; Let ev'ry heart---prepare Him room- and Heaven and nature sing---and heaven and nature sing, and heaven and nature sing"

We spent Christmas Even here at home with Cathy, she brought a fine crock pot dinner after work. We listened to Christmas music and remembered our grandmother Eve who was born on Christmas eve. Our parents moved  her to Hawaii with them on her 100th birthday. There she was interviewed by the local newspaper- she could still participate in something like that.

She told them that as a child in England, her family didn't pay much attention to her on her birthday so she pretended she was having tea with the Queen. What a different generation of children, or that's how  you develop the Scottish stiff upper lip.

On the health front I have been off the prednisone 14 days which was preventing vomiting. (I hate to even write that word) which is a symptom of the most common development following a related bone marrow transplant. So far, no problem. I'm going to my original oncologist every two weeks for blood work, so far everything is good on that. They are scheduling me for another bone marrow bx in Feb.  If that is clear then not again till July or Aug. Meanwhile I feel good, weak but my immunosuppresants will start to be decreased in a few weeks and that's supposed to be impacting my muscle strength a lot.

For some wierd reason I got a pulled muscle in my groin a month ago. It was very painful and put a stop to my walking outside, I've never has that before and have been told it can be a stubborn thing  that's hard to heal- it doesn't just go away.

I know my stamina is getting better, it is just so slow.

A very merry Christmas and happy new year to all of you and yours.

At about this time in 2006 I didn't know if I should buy a 2007 calendar, but here it is soon to be 2008, a lesson in what a waste of energy and time and emotions in fretting about the future.

Love to all, Margie

Every time you hear a bell ring an angle gets its wings

My bells are ringing, and if you can't see my wings rest assured I'm flying high in the sky above cloud nine. I am doing great as the doner during this wonderful Christmas season. After the transplant took place, I felt a little weak for about a week and a half. But i recuperated beautifully, I think my wonderful story is Margies wonderful story, Its just sooo enmeshed now. I'm so incredibly happy she is doing so well it makes me smile so brightly just for her, The beauty of answered prayers, and her faith and trust in God, is so inspiring Her attitude through all of this has been the best, It should teach us all so much about hope and happiness and a full wonderful life that she deserves and she just lives it to the fullest,

So i am again happily sitting at the old wood round oak table so full of joy this Christmas season having my sweet sister and Bob back home again, i have come over a few times and the joy on their faces,of being home is so jubilant. You almost have to watch it like a Movie to see what happens next, so there is Bob sitting in his chair reading his book munching on some home made granola,Margie cleaning out closets, getting ready for Christmas and yes she has a sweet little fake tree that's so pretty, What ever she doesn't have she makes it happen,I just love it.

Well i just want to take this opportunity to tell you my life is getting very wonderful, I believe i made a comment about e-harmony, a like six months ago, during this time i had been writing this guy i really was not to interested in, mainly cause he was in Montana, safe enough distance right? Not. Hes been here to see me three times and he will come Christmas day and spend a week here, He is the kindest person I've ever met, and is teaching me all about real love, acceptance,communication like Ive never known, we still e-mail and text each other all day and talk every night about relationships the past so we can look forward to the future having a healthy relationship and to top it all off his favorite movie is a Wonderful Life, So we always talk about life, Anyway kinda funny how Margie and i both have a wonderful life, Fell free to comment on this blog especially this time of year and To see how everyone is doing would be fabulous, Love you all and May God Bless each and everyone. Cathy

Home sweet home.

That was a happy surprise to turn this on and see you had blogged this morning Kathleen.
First off I do feel well, the weakness and tiredness is just always there but I'm no longer sleeping during the day like I did most days at the apt.

so measuring progress is a subtle thing. Neither do I sit around as much, everywhere I look I want to clean out,streamline, reasses the need for this or that. so I'm mostly productive all day. I guess I have a pulled muscle in my groin, thats what the Dr. says, but it has really cut down on my walking outside on distance and it's been like two weeks now. Then at pt she had me balence on something that is round on the bottom, forty five minutes of that and the next day I could barely walk at all. The pt thought I did everything fine, and I did, but I look better than I am at least as far as my muscles go, and it was too much, to fast. I'll tell her that next visit. She was also encouraging me to think outside of the box, like what sports did I used to play? well, dodge ball, basketball, kickball ( in the 9th grade I'm thinking) oh, and tennis. That would be perfect! (she's striving to improve my balence) I think I will strive for being able to resume some distance walking first.

For the record, I am doing 45min of 2# wt lifting and 30 min of exersize on a ball 4to 5 days/wk

Thanks for reading the blog and reading your comments is fun. Thankyou for your caring, concern and prayers. Love, M

So far, the snooze for which we are hoping...

Feel very pleased indeed that there is not much to report.
Spoke with Robert today. Their week shakes out like this: doctors visit with oncologist once a week, blood draw, talk with doctor about any changes, or problems, lunch.
Physical therapy, where progress is checked and new excersizes are assigned is also weekly. Staying indoors is pretty much a priority and away from people and their germs. (I know I've covered this adnaseum)
I know dad is thrilled to be back home- they were gone for seven months and not only did he miss being outdoors on the property, but the maintainance can get behind, so he's been busy doing clean up.

Margie and Robert can't have a tree in the house for Christmas this year, so of course that's dissapointing for Margie. I suggested a photograph of a tree sitting where the tree would normally be displayed. No?
Any other suggestions would be appreciated- feel free to share.
Love, Kathleen

Margie's wonderful life, now.

Well, just getting used to living in her own house again is fairly big at this point.
I spoke with Margie this morning and she told me about how here schedule would be now, what she has to spend her time doing and what the concerns are now.
Remember, it's not over till it's over?

This week so far she had an appointment with her Oncologist who now takes over her case since she's "dismissed", so to speak from the Hutch. The next day she had an appointment with her Physical therapist who thankfully is on the island.
Dr. Picozzi explained that right now and for the next 6 months to 9 months she is at her most critical. This means that her body is more vulnerable to infection and although Cathy's immune system is "in place", it is still battling within Margies' body and that's why the anti-rejection drugs, imunosuppressants, gvhd drugs, prednizone, etc.

From the first year anniversary post transplant to the 2nd year post transplant (next july 08 is one year post transplant)
that is when her vulnerability BEGINS to drop. So, you now are likely to understand my last post a wee bit better, as in Margie is so not out of the woods and we have to be as careful as ever. A lot of it for Margie is common sense: handwashing, staying away from groups of people and especially people that are in any way sick, were sick, going to be sick, thinking about going to be sick or just hung out with someone that was. You get the picture. She gets to go to the movies (she loves the movies) but only during off hours when there are like, 6 people there. She can't have a bunch of people in her house, invading her germ free environment. She and we must all be very careful, aware and thoughtful of her surrounds and exposure.

Ok, back to her routine:
Her appointment with her oncologist will be once a week as well as a once a week physical therapy. Besides that, her job is to get her body recovered from the hell it's been through and is still going through by doing 2 to 3 hours of physical therapy everyday, six days a week, including walking and using 2 pound weights on her ankles and wrists.
She can't go to the gym (we all know how moist and germy they are) Can't garden, touch trees and have any exposure to flora and fauna.

She'll be spending lots of time in her house, so she's busy writing a list of her daily routine (see above) as breakfast, p.t. and just stuff around the house is going to fill her day. She'll be able to spend time on the computer, something that she has wanted to do for a long time, read books, write, cook, and focus on her own health, what with the above as well as the condition that the last year has put her in, including but not limited to an onset of osteoperosis and neuropathy in her hands and feet/legs. During the last couple of months, another melanoma was found, so she'll have to undergo another surgery for that and I'm sure that's on her mind as it's not the best idea to let it go.

I hope I've given everyone some useful information as to what's happening now and although in the big picture she's an A student, she's still got a long, long way to go.

Love, Kathleen

It's not over till it's over...

what???

Yes, Margie and Robert have moved home. NO, the party hasn't started. She is not out of the woods on this one folks and is still in a very compromised position with her immune system and the various drugs she's on to keep problems at bay.

Please don't make plans for a visit as you'll be introducing the germs and bacteria of yourself and others into Margie's environment and that's just not going to work at this time.

She's got to lay low, stay out of circulation and generally stay in a very protected environment.

Thanks,
Kathleen

100% Cathy

Isn't that what we all want? Let me explain. Margie's team of doctors explained this week that her immune system has been 100% replaced with Cathys immune sytem. Science fiction or just magic? Luckily, very real and happening right in front of us.
Not only has her immune system been replaced, she's experiencing things that are evidence of the changes: Margies had a chronic allergic coughing for many years now... gone. Margie has always had thin, cracking finger nails: gone. I'm sure the list will get longer. This is truly amazing, no?

More big news: This sunday? DAY 100! I know you are as astounded as I am. Margie and Robert will be moving completely back to their home this thursday or friday and the relationship with the Hutchinson center will end and will pick up with Margies oncologist, Dr. Picozi.

This not to say that Margie is finished with this, but on paper, she's looking really great. Among the common sense stuff that she has to practice once she's home (hand washing, steering clear of sick people, etc) she also can't touch trees, any flora and fauna essentially. Not an easy task at their house. It is Washington afterall and with all that rain, things just grow.
She'll continue to take the wheel barrel full of drugs that she's been on since the transplant and the prednazone and get regular blood draws and check ups.
The next big milestone is one year post transplant. That is when, after she makes that, the Hutch team considers it a successful transplant.
You Go Girl!

Love, Kathleen