Thursday, October 22, 2009
Update- 2009-10-20
Tuesday last week we had a regularly scheduled visit with the palliative care doctor. This is the doctor who manages my quality of life and particularly my pain. My overall condition continues to decline. It is easy to feel additional hard spots throughout my abdomen which are likely actively growing tumors. Other symptoms of my declining health are losing weight, (about two pounds per week) water retention in my legs and feet, and poor kidney function. I am, however, still able to drink all the slushes I want!
Right now I feel "small." My body physically is shrinking - my arms and legs are small and wrinkled, and I 'm weak. I've been in some denial, like we all have, that the end is closing in, and it's hard to understand what's happening, especially since everyone (doctors, family, friends) keep talking about what a miracle it is I've lived so long.
We are constantly being lifted up by our many loved ones- family, extended family, family friends, ward and neighborhood family- all of you. We are especially sustained by our Savior. He strengthens us daily. Even so, all this love and support doesn't keep all of the anxiety at bay. Michelle and I feel the ache of anticipated separation. We and the children are working at coping with this drawn out process. Even knowing that all of us will die, that everyone loses a loved one at some point in time, doesn't really lessen the pain of my death. But, life does go on and we are being blessed.
So, we embrace each day to see what it will present, how I will feel, what I can bring about, what can be accomplished. We enthusiastically entertain visitors- please call first to assure we are available and presentable. A kind visitor and beloved friend, Krystal Scoresby was greeted while visiting on Sunday evening with a gushing forth of my bowels as I hugged her. Yes, I neglected to plug my G-Tube, and some of my stomach contents- cold water - drained all over her bare feet! I was so embarrassed, but that is where I am these days. Thankfully Krystal was very understanding. Thankfully all our family and friends are understanding of our continuing struggles too! We love you because you also love us . . . ;)
Sunday, October 18, 2009
One Year Later.....
Wednesday, October 7, 2009
(I have thrown in a scattering of pictures. They are in no special sequence or meaning, just some fun pictures to look at!)
We have had a very busy couple of weeks, many visitors and much to do. We appreciate so much the many condolences and well wishes we have received with the passing of Michelle's father. The memorial services were beautiful, worshipful, and therapeutic for all the family. Thank you and know that we love you.
We enjoyed a Family Council on Sunday evening where we SKYPED (see http://www.skype.com/) Benjamin and Jackie into the meeting from Norman, Oklahoma. They are enjoying all the experiences of typical newlyweds. Believe it or not, Benj got a job at the Little River Zoo in Norman, OK http://littleriverzoo.com/! He is responsible for the care of forty of their predators. Leave it up to Benj to score a job like that! Jackie continues to be active with Women's Sooner Volleyball and school. http://www.soonersports.com/sports/w-volley/okla-w-volley-body.html.
Alex mucking out the back pond for winter hibernation
I continue to "enjoy" my liquid diet. I try to "liquidate" new menu items on a regular basis. Cafe Rio's BBQ Pork Burrito isn't quite the same when "liquidated", if you get my drift! The nightly regimen of TPN keeps me going, but I am losing weight. I am down to 140 pounds. My doctor has increased my steroid medication again, so my "moon" face is coming back in swell form, but the remainder of my body is noticeably wrinkled and thin. Hopefully the energy levels will be swelling along with the face!
Isaac on the 200# giant pumpkin, from our wonderful neighbors
I am experiencing a gradual decline in overall health. My sense of well being is winding down. Nausea still bothers me the most. On the Ten Scale: Nausea= 3, Pain= 2, Overall Well being= 5. We still are welcoming visitors- love our visitors in fact. Please call first though. We have progressed to the point in my care that we are no longer really doing much with the doctors directly. The treatment plan is to manage nausea and pain to enhance our quality of life together, as my life winds down. Life is still great and there is much to do and much life to live. Heavenly Father continues to hold us up . . .
Uncle Bill in Little Valley above Wallsburg with a Rainbow