Nov 30, 2022

How's Jami Doing: The Big Update - Issue #1 - 11/30/2022

I’ve created this website (also an email list) to keep Jami’s family and friends updated on what is happening. My intention is to send regular updates, but the exact format is still a work in progress.

This is the first post, buckle up, it will be a long one.

Getting Everyone Up to Speed: Since there are quite a few people to update, I need to level set first to make sure we are all on the same page.

  • In early November, we found out the latest round of chemo Jami was on is no longer working. After speaking with her medical team, there are no more viable options for the type of cancer she has.
  • Considering this news, we have decided to stop any additional cancer treatments and let nature take its course. To keep her comfortable and help us navigate this unfamiliar landscape, Jami’s signed up for hospice care.
  • Around Thursday 11/24/2022, Jami starting getting severe headaches which caused nausea and vertigo like symptoms.
  • From Friday 11/25/22 to Monday 11/29/22 - the headaches and nausea have been getting progressively worse. None of the medication (including Morphine) were controlling the symptoms. We were up every hour redosing pain meds and dealing with the nausea.
  • After talking with hospice on Monday 11/29/22, we determined and Jami agreed, we should transfer her from home to the Evelyn House Hospice facility to get the pain under control. The goal is to find the proper combination and doses of medication that will keep her comfortable.
  • Once a medical plan is finalized and she is stable, we will transfer her back home.

Now you know the backstory of how we got to this point.

How is Jami Doing

  • Since admitting her to Evelyn’s Hospice House, the medical staff has been able to get her comfortable.
  • She has been resting (sleeping) since we got here. Which is good, she had a rough few days prior to this point.
  • When she wakes up, its only for a few minutes, then she falls right back asleep. Again, I can’t complain she needed the sleep.
  • I’ve talked to the nurses to get a sense of how they think she is doing. Right now they are saying it is too early to tell. They continue to adjust the medications and evaluate her.
  • I am most grateful that Jami is resting now. Her pain was pretty intense. It is nice to see the headaches more under control.
  • We don’t have a good sense for how long she will remain at the Evelyn House. It all depends on what Jami wants to do and the medications to keep her comfortable.

How am I Doing: This email is not about me, but a lot of people want to know how I’m doing.

  • I am fine.
  • I have a good support system with my family and friends who are willing to help us out in any way they can. My mom lives 2 houses down and Jami’s parents are in town staying with us.
  • I’ve been working from remote for many years now and I will continue to do that as long as I can.
  • WashU is a great place to work, I have plenty of sick time and FMLA leave when the time comes. I took today off to coordinate Jami’s family arriving in town, write this status update, and spend time with Jami.
  • The hospice organization has been WONDERFUL. I can’t speak more highly of them. For anyone that has to go though this situation, my advice is to engage them early. It does not mean you are giving up, it offers help navigating a situation that your not familiar with. They have medical, mental, social, and a variety of other support resources.

How are the Kids Doing: Lots of people ask how are kids are doing and I love talking about them, so…

  • Allison is finishing up finals and lab projects this week. She is catching the train home next Monday.
  • Elliot is getting close to Christmas break. He is still at home working on his Jr. year of high school.
  • We will work with the hospice organization to get the kids the resources they need to handle an event like this.
  • The kids are aware of everything going. Jami and I have included them in every major decision and event taking place since Jami was diagnosed in 2016.
  • We’ve launched the kids well and dedicated our entire lives to ensuring they have everything they need in life. Jami and I are so very proud of what they become, where they are going, and the great things they will do.

How is the Family Doing:

  • Jami’s parents arrived in town today.
  • Her brother and sister will be down this week.
  • We are blessed to live close by and can easily move between the house and Jami.

FAQ: Answers to some Frequently Asked Questions

  • Can I share this information with other people? Yes, please do.
  • Can other people be added to this email list? Yes, send me their email addresses or tell them to email me directly at addmej@zweck.net
  • Can I visit Jami? Maybe. Right now I would like to limit visits to immediate family only. Jami is very tired and the drugs are making her groggy. As we get the pain and medications under control we will revisit visits.
  • Can I call Jami? Maybe. For all the same reasons above, she is not feeling up to having calls right now. I will try my best to keep you updated when this changes.
  • Will you provide this information outside of email? I will keep my website updated with the same information. Check here: https://jasonmurray.org/tags/cancerupdate/