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| Sadie saying "No, I won't retrieve." |
During the past two-plus weeks we thought that we would be following the sun just as Paul and the Beatles recorded in 1964. Paul actually wrote the song in 1959 and the group waited until their fourth U.K. album Beatles for Sale to release it. It was placed on Beatles '65 in the U.S.A. A love song... sort of. Paul was relating that he would follow the sun if his relationship didn't work out. The Beatles wrote more than their share of selfish male dominated songs in the early days, the times they sure have changed since the early 60's.
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| Snow Angel to calm a fever |
Our recent journey was looking to follow a similar route (Sun), first we traveled to what was supposed to be sunny Colorado, warm Houston, interrupted by always nice San Diego- oops back to Seattle. Colorado was snowy and cloudy during our entire visit, Houston was down pouring rain and unseasonably cool, then when Dad and his heart brought us to San Diego we finally saw the sun. It was very nice our entire week in SD. Of course I was not in fine form during any of the journey. Most recently I developed either a bad cold or worse- I am not really sure but the pains and stuffiness continue. In Colorado and Houston I was having problems walking and with fatigue. My fatigue levels have improved but my left leg/hip pains have continued and are worse. I didn't really explain what occurred to put a crimp in our plans either. While still in Houston waiting for the next tests Dad had a heart attack. We made plans with the Doctor and her staff in Houston to accommodate a side trip to San Diego and thought everything was moving forward. During our visit with the Doctor she said something that made us both think. She said something like "I need to check and see if they are still accepting people in the study." Yvonne and I exchanged a glance but did kept quiet as we continued the discussion. I thought she meant that one of the two studies might be problematic, but not a sure no-go. After more discussions about whether I had cancer or not??? and how the upcoming testing would determine or prove that (again ???) we left the meeting after 6PM at the end of a very long day. I eventually got my bearings when we got to San Diego and e mailed the doctor with a yes-no question. Her reply was a little more clear, but still not yes or no. I followed up with another message as making travel plans and the logistics were very difficult for us. She finally told me that there were no openings in either study and suggested I wait for three weeks (if someone leaves I could enter) or perhaps I could return home to receive more standard treatments while I wait. My reply was easy- I returned home. I can't tell you how disappointed we both were, many people contributed funds to help us go to Houston to enter what I was told were one of two studies. To have the dream crushed made me feel a failure on top of having worsening health problems. Luckily we were not maxed out financially, just emotionally.
There is some good news. I received my bone marrow biopsy results from Houston, showing around 1% blasts- a number that normal people have. Little or no cancer in the marrow means that my relapse is lymphoma (if anything) based instead of leukemic. I still have some lymphoma lesions in my stomach area and I suspect my left leg and hip... My way of staying true to my supporters is to commit to further research to find a clinical trial or alternative treatments. So far I have found potential trials at Stanford U. and maybe one in Seattle at the Hutch. I will expand my search to include the Caribbean and Hawaii- but will not hold my breath on those! We see my ARNP tomorrow and we are hopeful that we will come up with a plan for the near term. Please enjoy the video, it has real good early Beatles content. Live Happy in the snow or in the sun.


16 comments:
I hope one of those options pans out. I'm glad Dad is recovering so well! Love the pictures. We are getting ice pellets falling and cold tonight, ugh!
As always, Prayers, Prayers, and more Prayers.
Great pics. We have had an awesome winter so far - very little snowfall, BUT there is talk of snow for Wed-Thurs - bah!
Sorry to hear about Houston - emotionally draining & I'm sure physically. I am glad to hear that your marrow is still holding up :) - I pray for relief from the other symptoms that are causing you discomfort and that another trial is around the corner.
Very glad to hear that your father's recovery is progressing nicely. Think about always - shake that cold and be well.
That Doctor's total cluelessness, lack of compassion, or and/or lack of insight is stunning. If that place has such an inability to communicate clearly what is obviously critically important information than it may be good you found out on the front end. That being said, I am keeping my fingers crossed that you will find another study that is in a better location and that has doctors who actually have a clue that they are dealing with "people" not "openings."
It is good to hear the news about your dad.
That Doctor's total cluelessness, lack of compassion, or and/or lack of insight is stunning. If that place has such an inability to communicate clearly what is obviously critically important information than it may be good you found out on the front end. That being said, I am keeping my fingers crossed that you will find another study that is in a better location and that has doctors who actually have a clue that they are dealing with "people" not "openings."
It is good to hear the news about your dad.
Greg, what a journey your trip to Houston was. Yes, very unfortunate and inconsiderate the way you were treated.. Carol had it right, they need to treat people not openings. Glad you are back home safe and sound. Loved the snow angel picture! You look cute. :-) And you guys have a lot of snow for Seattle. We had an ice storm here this afternoon, the sidewalks were so bad none of the students could stay upright. They cancelled classes in the afternoon. Got me out of 2 meetings and freed me up to finishing packing. We got snow on top of the ice. The middle of the state had a tornado warning...go figure. Hoping you get over that little cold and the Seattle docs get you fixed back up. love and prayers,
Mary D.
Thank you Carol Mary, Edie, Cathy and Hank. I am still "on hold" with MDA and haven't given up but it was not a fun experience. I went in Monday, had an MRI yesterday and see Dr. Senecal again on Thursday. In the meantime I have sent out feelers to the Mayo Clinic, Dana Farber, Fred Hutch and others for experimental stuff. More later...
In honor of Trooper Tony, I will be quiet today. I hope that those attending the memorial can find some peace from this tragedy.
Greg, just checking in. Hope all is well. Visiting nurse in tommorow. Keep your spirit up and keep us posted. Love Dad
I had some interesting Dr. appointments. It looks like my left hip is OK, I thought I had some disease there due to pain- but the MRI said it was OK. I am being scheduled for a PET scan hopefully soon- then the Dr. will recommend some chemo if the disease is still boiling up. The Dr. from Texas has not returned any calls to my local Dr. (she wanted to recommend a chemo protocol for me) so we are waiting for the experts to chime in from the Hutch or Texas. A little frustrating I have to say. On top of that I am pretty sure Graft VS. Host disease is back, possibly causing the pain, face rash, fatigue and intestinal problems. No big worries with GVHD, its only minor.
Any news from Dr. Senecal ?? Keeping fingers crossed.
Hi Edie, I saw Dr. Senecal twice this week, he was very kind and treats me like a valued human being/friend. He admitted that he is at a loss for my future treatment and is working with the Leukemia/Lymphoma professionals he knows. I might receive a call before we see him next week as he is known to call me as soon as he knows something concrete. In the meantime I am feeling better (GVHD can be treated with steroids and other over the counter products.)
welcome home sorry about the Houston BS, please take care of you and Yours :-).
Wishing you and Yvonne a good weekend! I was working at RJC yesterday and get to stand on the sidewalk to pay my respect to Trooper Tony. Also pray that you will get some good news soon from the doctors. You are so tough, even tell us not to worry about your current discomfort called GVHD. You are a huge inspiration to me and to my family! Live Strong and Happy!!
Greg, hope you are doing a little better, I seem to improve every. day. Love Dad and Alice
Glad to hear Dymerski's are still made of tough stuff - - beginning when I met you all, energetically playing b-ball in your driveway so many years ago. Your love for each other, and your grace under pressure, is inspiring! Prayers and best wishes for the best of health - - to Greg, Cathy, John + family.
+- Dave Perrine
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