Just wanted to say “happy 2011!” Counting the days to see u all! I know, I won’t be able to see all of u but I am so looking forward to see as many of u as I can! My family is here to celebrate the new year with me – had traditional japanese new year food (ozoni – once a year made with mochi) and it was good – can’t have it all the time -it definitely is a once a year delicacy! The kids enjoy it also which is good! I wish I will be able to get better to enjoy all these traditions with the girls but I’m sure they will be bombarded with them from my family! Looking forward to dinner! Glad they r enjoying the day with their cousins! Happy New Year!!
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This week has been an emotional rollercoaster and an overall crappy way to end an overall crappy year. With things as they are, there is little doubt that 2011 will have its share of bad times however, we remain optimistic that things will soon look up.
We wanted to thank you for all of your well wishes and support. It has truly touched our hearts and has made a world of difference to our beloved Satomi. Please keep the messages coming!
Have the very best of new years and we will speak again in 2011.
I’m going to bed.
Satomi signed an Advanced Directive today. We have been discussing it on-and-off for the past week. It gives instructions to healthcare providers detailing Satomi’s wishes including a Healthcare Power of Attorney, resuscitation instructions, organ donation, and primary physician information. It is not a “Do Not Resusitate” (DNR) order.
The AD is a bit redundant in our situation. In cases that an AD does not exist, the spouse is the primary responsible family member so I’m on the hook either way.
If the patient did not want the services of their spouse or immediate family, this form would be used to legally define the patient’s preferred representative. It’s an important document to preserve the wishes of the patient.
I apologize for this post not being overly emotional as it is obviously an emotional subject. A lot of tears were involved with this form. That’s the exact reason why this post is so dry. I wrote it that way so I wouldn’t relive that terrible discussion.
Satomi and I are in our 40’s and our parents are in their 60’s and 70’s. Many of you are also that age. An AD and possibly hospice care will play a role in all of our lives sometime in the future so I thought it important to post that we had completed one and talk about the mechanics of the process. Hopefully we can convey some useful information to all of you.
In the future I promise to publish the emotion filled post but definitely not now.
We are still discussing home care. Satomi is concerned that the girls will be traumatized if she degenerates while at home. She wants to enter a hospice facility as her illness progresses. So far everyone disagrees with this position including our RN, several of her doctors, my therapist, Satomi’s best friend, just about everyone we’ve bothered asking, and me.
The consensus thus far is that our girls would be better off if they are involved with the process and spend the maximum time with Satomi possible. I would definitely change my position if Satomi’s care warranted 24/7 care beyond our capabilities but I remain confident that we can care for her. Maybe I’m fooling myself but I guess we’ll just have to see what happens.
The Palliative Care RN had arrived today to discuss the advantages of Hospice care and to answer our questions. Since Satomi was so familiar with the process, it sure seemed that it was mostly for my benefit. More importantly though was that I wanted someone besides myself to hear Satomi’s wishes and really verify that our choices were prudent. With Satomi’s hearing problem, I was being extra careful. The possibility of a misunderstanding would be just devastating to me.
The RN was very informative and has been handling both Palliative and Hospice care for many years. She explained the procedure but more importantly we discussed likely scenarios and practical changes to Satomi’s care. Hospice care is not curative so anything intended to treat the cancer itself would stop. That includes blood work, placement of the Portacath, all scans and MRI’s, as well as normal doctors visits. Her care would be limited to symptom and pain management-Medication or equipment to aid her dizziness, nausea, seizures and headaches. The care itself could occur in our home or in an outside facility. The discussion went slowly because the RN wrote Satomi notes about everything just to be sure.
Halfway through the discussion, Satomi’s best friend arrived. She was a welcome asset to the discussion as a fellow medical professional (Physical Therapist) and mother; Satomi loves her very much and trusts her character and opinion implicitly. I was very eager to hear her opinion.
I was surprised to hear that hospice care was completely elective. If I wanted to pull hospice care and take Satomi to the hospital, I could for any reason. This sounded a bit funny to me and goes against my nature however, it does allow us the flexibility to change our minds in a very stressful time. Satomi told us of several instances when she pulled her father out of hospice care so he could be rushed to the ER for a seemingly unrelated health problem. This was reassuring.
The conversation continued for some time. There were a few difficult and emotional moments but in the end, we all had a similar opinion. I am now convinced of Satomi’s motivations and the reasonableness of our decisions. Hospice care is the best thing for us now.
Satomi's Cancer Blog 