Wednesday, August 14, 2013

Gotta put on the P.A. the new CA

Thanks Stan for the title. I wanted to call it, "Time for the Happy Dance Again" but he said, that's too old. It also makes me a bit sad because my friend Tammy who taught me to do the Happy Dance passed away a few months ago. I can still see her grab my hands, lift me out of the chemo recliner and say, it's time to dance! I miss her, but I will never forget her optimism and zest for life.

I had my visit with Dr. Downey on Monday. The great news is that the CA-125 is down from 241 to 77!! I was prepared for it to maybe even go up, because that is what they often see when people are started on Doxil. He also reviewed the results of the CT scan from last week. The one larger spot near my gallbladder fossa is the same size. There are a few other spots that look like they have gotten smaller. So this is also good news. My biggest side effect from this drug (besides being tired) is a rash I have on my legs. But, they said, sorry you have a rash, but we think you should continue with this drug because it seems to be working. I agreed, and they gave me some meds to help with the itching. I still miss my "hot" things, but I am getting used to throwing some ice cubes in my morning coffee. So far, no big problems with sore hands or feet.

I have been able to return to work a little bit. I have taught three Sat. childbirth education classes and worked on the floor some. I prefer 4 hr. shifts, because I really am tired when it's much longer. It has been so nice to see all of my co-workers again. I really did miss them. Another nurse from our unit was just diagnosed with Leukemia, and has to be up at Spectrum for a month. We are all so sad and shocked at this news. Our hearts and prayers go out to Paula and her family.

That is the one thing that just seems to be a constant. the waiting room at the oncologist office is always full of new patients that seem to have the same look that my family and I had when we first were there. "Deer in the headlights" look and fear of what they have to go through. Aug. 1 was my second year anniversay of learning that I had cancer. I remember thinking, if I could just have another year or two, that would be so wonderful. Well, I got that, and I am thankful everyday that I have been around for so many wonderful things, Ross, Rumy, Mieke and Aaron all graduated, their wedding, the birth of my darling little grand daughter...and so many other wonderful moments with family and friends. I don't take any day for granted, I look at them as a gift. I was happy to have another birthday.

I am having lots of fun helping Mieke decorate her new classroom in Hudsonville. When Stan saw the picture her principal took of her signing her contract, he said, this makes all the tuition to Hope College worth it!!

Every thing I read about living with cancer says that you need to be hopeful. This was in a recent email:

  • Be true to yourself. Make sure that you are doing activities and involved in relationships that keep your sense of self and identity separate from your diagnosis of cancer. (working and teaching help me feel "normal")
  • Stay connected. Both formal and informal relationships provide a positive impact on your life. (girlfriends, PEO sisters,family)
  • Set goals for the future. This will give you a sense of power over your own health and well-being.(I need to add a few more things to my bucket list)
  • Find ways to give back. Use what you've learned to help others. (I hope to start doing Kids Hope again and volunteer at church more)
  • Stay in touch with your spirituality. This is defined by your personal sense of spirit and may be religious or meditative in nature. (Keep believing in the power of prayer, attend a Bible Study and keep daily devotions a priority)
Stan just left for his golf league. He is not happy with how he is playing this year. But he still enjoys the guys and being out in the fresh air. Our garden up north is starting to really produce. If anyone needs zucchini, let us know!

I you want to see a little of Rumy in Bulgaria at their concert. Go to You Tube
Rumyana plays Rachmoninoff     It is amazing, all for memory too.
http://www.youtube.com/watch?v=XZUQw0bWkRU&feature=share

To see pictures of Ainsley Grace: try this site:
http://www.flickr.com/photos/35538699@N04/



Saturday, August 10, 2013

The Sog in the Blog

Stan Here:

Being up and down the streets of our town I have heard several comments and questions about why no more postings on the Blog.  In other words a noticeable sog in the blog.  Well here is why.  It has been sort of a goal around here to reach this point.  So no news is good news as they say and for the most part there has not been all that much news around here lately on the the health front.   But now I have a couple of things I should post.

It is Saturday.  Temp outside is around 72, wind is not blowing and I think if you had to look for a word to describe the day you might try to find a word something like pristine.  And inside of that word we have a couple other things I just have to tell you.  Some of you know that we have been blessed with a new grandchild and tonight we have the burdensome task of needing to visit her and take care of her for a while so Alden and Mary can attend a wedding.  I know this is going to be a tough one.  But I think we can do this!!! I know it is so boring for people to talk about their grandchildren but it seems to me that as these things go we have got a good one here.  She is a couple of months old and she can even muster a smile.  She kind of frowns at me but when Deb holds her she smiles.  I can handle this.

Plus we picked up Ross and Rumy yesterday from a three week trip to Bulgaria.  They had sort of a interesting thing happen.  They got stuck in Vienna (sp) for a day because of a late plane.  Now for two musicians to get stuck there is not a bad deal.  It was kind of touching to hear them talk about this.  They visited the home of Mozart. Both Rumy and Ross have such a deep appreciation for music that when we picked them up Ross reported that a few tears were shed as they toured his home.  I think that for many of us we cannot understand this all that much but somehow for them this event stood out and meant a lot to them.  Ross talked about it all the way home.

I have one other kind of fun thing to tell you about.  Mieke received a teaching position in the 4th grade at Hudsonville.  I think I have reported to you before that she has such a passion and love for teaching and children that whoever gets her will be lucky.  So she and Deb cleaned out our basement of all of the stuff she has stored to set up her classroom and they loaded it all in the car a day or so ago and went to set it up.  So I get a clean basement out of the deal and some kids over there get a good teacher.  I am writing a story for her. Her theme is A Rode Trip through the forth grade.  So I am writing a story that she can read every day about the adventures of a guy by the name of Blarry McGlary who travels on foot and visits every state in the USA. I called her last night to see if she could use this.  They teach about the USA and the capitals in the forth grade and you can be sure this guy is going to all of those places and that he will have some adventures along the way.  Should be fun.

Now I just put some birdseed out in the backyard.  And sure enough I have this Pileated woodpecker who jumped on the feeder.  For those of you who do not know this bird it sort of looks like Woody the Woodpecker.  Not sure why this is all that significant except to tell you that the red head reminds me of one other thing.   While it has been true that the medical events around here are somewhat calmer than in the past, it is also true that recent times have not been trouble free.  As a result of the chemo drug that Deb is now taking she is suffering through a pretty strong rash.  She is teaching a childbirth education class today at Holland Hospital and she has been able to work a little this week but I could not help but feel sorry for her when she left this morning.  When she was started on this chemo drug she was told the the side effects would have some of this and this has been kind of roaring in these past days.  Only she could blast through this without complaining all that much, but I must tell you that if it was me this thing looks like it has to hurt.

She and I went on kind of a nice trip to the UP with her parents this past week.  I had never seen the Soo Locks or the pictured rocks and we did both of those things and more.  On the way back she had to have a CT Scan and some X-rays in GR.  We get the results of those test on Monday when she sees the oncologist and she has more chemo.  So if you are a praying person if you could put one in for us I would appreciate it.  We are hoping that the test will show further reduction of the cancer.  She also still fights pretty hard with issues surrounding her illiostomy so I do not want you to think we are totally in the clear.  I do want you to know however that life is OK over here.

 Plus I want you to know that I think my Grandchild is nice looking if I am allowed to say that.

StM